Lonely, liking and sharing

I feel lonely sometimes. As a matter of fact I am quite lonely, because I make myself lonely. I’ve been thinking a lot about this lately. (This post won’t be very well articulated because my head feels like it’s filled with mashed potatoes.)

I know that if I responded more in conversations I would probably have more friends. There are a couple of other things that I theoretically could do that also would result in more friends, but the thing is that I can’t do it. I can manage reading through twitter, but I can’t handle conversations too often, and certainly not with too many people.

I can manage quite a lot of social contacts if they are superficial and I have no obligations, like in a facebook group where I participate in conversations when I have the energy for it. As soon as people get closer than that, I can only deal with a few people. It’s not that I don’t care about people – I care a lot – I just find social interactions exhausting most of the time.

This is shameful to say but sometimes I tend to feel more validated when people click “like” or share something that I’ve written, than when people comment on it. At least this goes for people I don’t know well. Sharing or liking something means “I’ve seen this, but I don’t demand more interaction from you”. Every now and then I read about people complaining that social media is full of too much clicking and too little conversation, but I really don’t agree. I have other blogs, besides from this one, and every time somebody shares or like something I’ve written, it means something to me. Every time. It still does, after having had my stuff shared for five years or so.

I love blog conversations. When I read a post by somebody else, my thoughts starts spinning, and I write something related to it. Then, a couple of days (or weeks, or months), that person (or somebody else) writes something as a comment on my piece. These are conversation with enough space to elaborate on ideas and thoughts, and a kind of conversations that have been a big part in how I’ve changed my mind on certain issues. It has shaped my understanding and I’ve learnt so much through these kind of blog conversations over the last five years.

I guess I’m rambling about this because I’m trying to understand my own behaviour better. I’m just trying to understand what I need and that it’s okay to not want hundreds of semi-close friends.

Update: I don’t mean that people aren’t allow to comment, you are. Otherwise I wouldn’t have made it possible to comment here. I’m just trying ot figure myself out, since I’m not who I thought I was.

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Picky Eater

Content Warning: This post includes mentioning of being forced to eat and nausea.

 

 

Earlier today, I fell to the floor in my kitchen. I’ve slept worse than usual for two nights in a row, and that made me physically weaker than usual. When I was preparing an easy snack, my legs just couldn’t hold me up anymore and gave out. It wasn’t a bad fall, I stayed conscious and could use my hands enough to avoid hurting my head. Luckily my partner was at home and could finish preparing the snack for me as I crawled back to bed. I could hardly speak but managed to push myself to say the word “cinnamon”. I needed my partner to put cinnamon on my yogurt.

Some people probably wonder why I made an effort to say something as seemingly unimportant as “cinnamon”. Why did I waste the little energy I had on getting cinnamon on my yogurt? The answer is that it wasn’t unimportant. Without it, I wasn’t going to be able to eat my yogurt due to the easily triggered nausea and queasiness.

I’m a picky eater. I’ve always been a picky eater. When something about food is wrong in some way, not only do I dislike it, but I get nauseous or actually throw up. When I’ve slept worse than usual, when I’ve experienced a sensory overload or when I’m in PEM (Post-Exertional Malaise) the level of constant nausea is higher, which makes me even more picky about food. I’m picky about texture, spices, temperature and even things like the size of my spoon. A big spoon for my breakfast yogurt leads to queasiness, and I will therefore not put a big spoon in my mouth. Today, my partner is the one cooking for me and he respects my needs. He doesn’t understand it but he doesn’t question why I can eat certain kinds of food when I’m feeling okay but an hour later it’s impossible. He doesn’t question my pickiness at all.

As a child, the situation was different and therefore food was a difficult part of life. Food and eating meant a fight and people trying to force me to eat things even though just the smell of it made me nauseous. I remember dinner at home as okay, my parents’ cooking was usually good and I was slightly less sensitive in the evening than earlier in the day. Breakfast and lunch was awful though. Lunch in school was mostly a horror: A big, noisy room with horrible lights, smells and a lot of people moving. I was forced to take a certain amount of food on my plate, and then I had to eat at least half of it. I couldn’t, so every time I didn’t manage to throw it out when nobody was watching, I had to stay in the canteen as everybody else finished and could leave. Not that it helped, I refused to eat and at some point my teachers gave up.

One day when I was around six years old, the canteen served an asparagus soup that was just as awful as most of the food, but this day I really didn’t want do the usual act of throwing it away or being forced to stay. I decided to try to eat enough to make my teacher happy. I wanted her to stop being so disappointed with me during lunchtime. I took a spoon of soup and put it in my mouth. Immediately my stomach turned and I was very close to throwing up in my bowl, but with a lot of willpower I managed to keep it down. I hade some sips of water. That was awful, but when I looked up I saw my teachers face and she smiled at me. Since she obviously was watching me closely now, I had to do it again. So I did. I managed to eat half of my bowl of soup, got to leave the canteen with my class mates and was praised by the teacher for behaving so well.

Today, I feel really sad when I think about this. I was praised for forcing myself to keep eating even though I almost through up. After that, I thought that behaving well meant to do as I was told, no matter the consequences for my well-being.

Why I’m an Outcast: Dehumanizing Logics and Parent Perspectives

I recently tweeted about that I’ve become an outcast among parents to disabled (especially neurodivergent) children. From being someone whose articles were read, shared and praised by other parents, I’m now mostly ignored. Not that it’s unexpected, I knew I had this coming.

A couple of years ago when I started to engage in a particular organization, I was a bit uncomfortable with some of their vocabulary. However, I actually thought that their rhetorics was mostly a consequence of not knowing better and that I could contribute to a change. I was fairly new in the disability community, and naively enough I thought that my experiences as disabled myself was going to be considered an asset. I had a lot of internalized ableism that I had never dealt with and I think that made me less critical, even though I was never comfortable with the ableist views that were presented.

One of the things that this organization promotes strongly is the perspective of parents. They are centering parents’ views of poor healthcare, poor schools and so on, instead of promoting the voices of disabled people. I have a huge problem with this, and in this post I will dig deeper into three aspects of this problematic perspective.

The first one is that even though many of these parents are really suffering from having to fight very hard for the rights of their children, centering their own experiences leads to dehumanizing of disabled people. Parents may be depressed, worn out and not being able to work because of all the fighting for accessible education and healthcare for their children, but that is not the core of the problem. By focusing on how much parents are suffering the main issue is obscured. Because the main issue with ableism is that disabled people are seen as inferior to people without disabilites and are therefore denied access to basic human rights such as education, health care and communication.

When I see these parents advocate for better healthcare for their disabled children by arguing that parenting a disabled child is basically ruining their lives, not only are they stealing focus, they are also talking about disabled people. Since they rarely promote the voices of disabled people, but instead ignore and sometimes even try to silence disabled adults that question them, they are contributing to making disabled people objects to talk about, instead of partners to engage in a conversation with. I believe that both these aspects are obstacles to an actual change.

The third issue is that a a lot of these parents are disabled, just like their children, but that doesn’t change the perspectives they are promoting. It really doesn’t matter if they are autstic or not when they advocate from a neurotypical perspective. When they talk about disabled children as they were some sort of aliens, completely different from themselves, they are promoting ableist views. Over and over the same narratives are presented and that includes realizing that something is wrong with their children. This insight is usually followed by statements about how they never chose for their child to be autistic (or more likely, “have autism”). The common denominator of these stories is that their children’s disabilities are portrayed as tragedies, instead of focusing an the actual disaster – ableism.

The situation for parents of disabled children can be very hard, but that doesn’t legitimize for parents to reproduce the dehumanizing of disabled people. Change will come from refusing to conform to dehumanizing logics, where disabled people never get to be the center of our own experiences. As sad as it is to see parents of disabled children reproduce the problems they claim wanting to fight, at least I know my own principles. I am rather ignored than being a part of you, if my belonging to you means allowing you to treat me as inferior.

 

Longing for confirmation and comfort

I’m kind of ashamed to admit this but sometimes I find myself in this really desperate longing for confirmation of my autistic identity. Very few people that know me behind the anonymity know that I’m autistic, and I feel like I’m fooling people, or being deceptive and manipulative. I don’t want to live in the closet like this, but I have to for my kid’s safety. I guess that’s why I sometimes long so hard for somebody to acknowledge my identity. For somebody to see that certain things that I can’t do or do in a specific way is because of me being autistic, and not because of my other disabilities.

There are people in my life who know that I’m autistic and respect it, but most of them aren’t autistic themselves. To be honest, I don’t know why that matters so much to me. But it does. Maybe I just wish I had a context, or an autistic community of people where I could stop the passing act. Where I could LEARN to stop the passing act, because right now I don’t really know how to stop it. Not that I always pass, because I do come off as weird, but my weirdness is perceived as being rude, shy, too intense or a bunch of other things that tend to be ableist with a touch of misogyni. That’s not a confirmation of my identity.

On top of longing for confirmation I’m longing for something else. This is even harder to admit but I need to state it: I want comfort. I’m not very good at being comforted by other people but right now that’s what I want. I want someone to hold me and help me carrying this mourning because it’s too much for me. A couple of months ago I wrote that I won’t mourn forever, but right now I’m wondering if it will ever stop.

Failing to navigate

At the moment, I’m thinking a lot about my childhood memories. The happy ones as well as the sad ones. Looking back at my childhood and adolescence, the most prevailing feature of my experiences are confusion. A never ending quest for understanding something that still is so hard to describe. Like I was trying to crack the code and figure out some kind of universal truth about life and mankind. Almost like I needed a theoretical framework to apply to life in order to understand something. What was it that I was trying to understand? Human behaviour maybe. Why people acted like they did. Why there seemed to be certain rules that I didn’t know, though I could sense their existence. Rules I was expected to follow. Rules I was punished for not following.

I think this is the main reason for why DBT was partly helpful to me. It gave me some sort of help to navigate. It made me less confused, at least in the beginning. Over time, the negative aspects became more and more obvious though.

Trying to understand this constant confusion that seemed to permeate my life for such a long time, I think this is a part of being autistic in a world that isn’t very friendly to autistic people. I was trying to navigate, I worked really hard on it, but I failed. Over and over. Today, as an adult, I’m trying to forgive myself and letting go of all the shame it created.