What We Do

A while ago I wrote a post about how I tend to feel like a bad parent, mostly because of the disease that makes me unable to to a lot of parenting stuff. Since then I have thought a lot about it and realize that even though I don’t do a lot of the stuff that I think of as parenting, I do other things with and for my kid. To help my memory along the next time I feel like an absent parent, I’m going ot publish a list of some of the things we do together.

So, here it goes.

  • We chill in my bed with an iPad/phone/computer each, headphones on and indulge in our interests. Every now and then my kid interrupts me to show something he has written or a picture he’s been drawing.
  • I tuck my kid in at night. Put on his duvet, make sure all toes are covered (a ritual that he loves). Then we say good night in three languages.
  • We look at pictures and movies, both from when he was younger and more recent ones. He’s learning how to search among pictures and movies using keywords on my computer and loves it.
  • We write. My kid writes short stories on his ipad (or sometimes on a computer) and I write my stuff. Recently he started to care about spelling so now he’s asking me how different words are spelled and I have to try to explain different spelling rules in English and our first language.
  • I create visual supports of different kinds, and my kid is always involved in this. He gives me input by telling me how he understands pictures for instance, so I can create schedules, instructions and illustrations of different kinds that help him.
  • We make illustrated stories about things that are going to happen, things that have happened and things that my kid wishes for. We use a special app where we combine drawing, pictures, text and record talk.
  • We read together. The more severe my ME has become, the harder it is for me to read out loud but sometimes I read to him, other times he reads to me.
  • Stim. We color stim by blending colors in my drawing app (SketchBook), and look at things with nice, deep colors.
A red infinity symbol with traces of blue, yellow, green, pink and purple. The background is light blue with a hint of green. The picture is painted to look almost like clouds.

 

This list is by no means exhaustive and as a parent I do a lot of things that are more boring and not obvious to my kid, like planning different things with my partner, preparing for different events, arranged an assessment of my kid’s hypermobility and so on. But the list above is a good reminder of that I actually do spend time with my kid and I am his parent.

My way of parenting doesn’t fit the idea I have of what parenting should be, and it makes me doubt myself as a parent, but I need to remind myself that I do what I can considering being quite severley ill in ME, bedbound and housebound. I don’t parent in a conventional way, but I can give my kid something that I didn’t get: Space to explore and be his autistic self.

The Lonely Polyam

Content: This post includes mentioning of an abusive partner, but no explicit details.

 

I don’t know how old I was the first time I realized that I could feel romantic kinds of love for more than one person at the same time. At the time when it happened I didn’t know that there were other people who felt the same and to me it wasn’t an identity, I just considered it one of my flaws.

A couple of years later I was familiar with the term polyamorous and I had found a couple of people to talk to about it. I had come to the point of articulating the question “How does it come that it’s considered perfectly fine to love more than one child, more than one friend, more than one sibling or parent, but never ever to love more than one person as a romantic partner?” To me, this was an honest question but most people outside my poly community seemed to interpret it as a rhetorical question intended to provoke. I didn’t want to provoke, I wanted answers. I wanted to know what I could do to either stop feeling the way I did, because it was obviously so wrong to most people, or to figure out a way to live with my feelings without hating myself for it.

Because, even though I ended up as a speaker in workshops with such great answers about all relationships being hard and demanding work and what not, I never actually figured out how to deal with myself. I had a girlfriend and after a while a boyfriend too, and it didn’t work. I ended up with the same problems as in most relationships of any kind, but so much worse. Everything that was difficult for me in relationships was intensified to a point that teared me apart. Having more than one partner and taking a totally different direction than the conventional path with one partner at a time meant that I was exposed to being misunderstood by more than one person at the same time. Everything that was weird about me, all the stuff I didn’t have words for, became even more weird and impossible to relate to. Living a poly life with all the unpredictability that came with it made me more lonely than ever.

Today, I think that there were many reasons for this. One was that the girlfriend mentioned above was mean and actually abusive, another was that I didn’t understand myself as an autistic person with sensory and emotional overloads. I need to have plenty of time on my own to process and when I didn’t get this I had so many meltdowns that I never understood. I need to know that my processing time is something that will be respected, something that I didn’t experience in most relationships. At one point I was sure that the poly thing wasn’t for me, that it was just a phase and that I needed to put it behind me, so I did. Or, I tried to.

I’m still able to feel romantic kinds of love for more than one person, but today I live in a monogamous relationship. My partner accepts that I’m polyamorous but I hardly have energy to maintain my relationship with him, and there’s absolutely no practical possibility for anybody else. But, I loved someone else too a couple of years ago and until recently I’ve felt so guilty about it. I had forgot that it’s possible to love two people at the same time and felt like I let my partner down by loving someone else too. And then it hit me a couple of days ago that just because I couldn’t handle more than one partner at a time doesn’t mean I don’t have the ability to love two people.

The answer doesn’t help if I don’t know the question

I’ve been writing about Liz recently. The memories of her have been haunting me, partly because I miss her, partly because there were a couple of things about our relationship and what happened that I could never grasp. Feeling confused in relationships is so common to me that I take it for granted, however, with Liz my confusion was worse than usual. (I have a problem with delayed processing, which means that it takes time for me to process and understand interactions. I come across as indifferent or cold when I don’t understand what’s going on in the moment.)

Yesterday when I was writing about her, one of the knots untangled. I could finally phrase a question that I’ve had the answer to for a while, but since I didn’t know what question I was asking myself the answer didn’t help much. My post from yesterday is called Would you love me as disabled? and that’s what I’m wondering. The very painful answer is no, I don’t think she would. At the moment I can’t say if this is a rational assumption or just my internalized ableism talking, but I don’t think she would have had much feelings at all for the disabled me.

Being with her was exhausting because I was so exposed, so bare, and still I tried to keep up the appearance of being the non-disabled version of me. It was an impossible mission and that’s probably why I froze so many times.

 

Ableism From the Outside to the Core

In my last post I wrote about ableism in romantic relationships, with an example of power dynamics within the relationship. With only one example it was by no means an exhaustive account for how ableism can operate within romantic relationships, and at some point I want to elaborate more on this topic. Before I do that, I need to sort out some thoughts on how ableism can affect a romantic relationship on a different level.

I have spent a couple of years trying to wrap my head around a specific experience of how an ableistic society made a relationship impossible. As some readers of this blog probably have noticed, I was once in the beginning of a relationship with someone that I refer to as Liz. It’s probably annoying to some people that I’m a bit cryptic when I write about her, but I have to in order to protect both myself and her. Anyway, the story about Liz took place a couple of years ago but it’s not until recently that I could begin describing to myself what actually happened.

I was deeply in love with her. She told me she loved me and wanted to be with me. I froze and couldn’t tell her how I felt. She thought I was indifferent. The truth was that I couldn’t give her what she wanted in terms of a relationship, because of my (and my child’s) disablities. Because of an inaccessible, oppressive society that puts up obstacles and deny chronically ill and disabled people adequate help and healthcare. So I let her go, I didn’t even fight for her. Instead, I felt ashamed to the point where I thought I was a disgrace to… well, I don’t know to what. To love maybe, because how could I claim that I loved her when I didn’t even give a relationship with her a fair chance?

And yes, I’m still being secretive about the details necessary to make sense of what happened, simply because I still can’t grasp the reality of ableism. I’m hovering over a specific thing here, a part of reality that I can’t make myself write in plain text. Not yet.

The point is that romantic relationships are affected by ableism in more ways than just as a form of power dynamics within the relationship. The fact that a specific manifestation of ableism comes from outside the relationship doesn’t mean that it stays there. My experience is that it can permeate what I feel, how I act and what I communicate to the point where it’s playing the leading part, without me detecting it.