We Will Always Have Our Script

“This is a hard situation”, I said to my kid.
“Yes, this is a hard situation”, kid replied.

This is a dialogue that took place a couple of days ago, when my child was upset. The lines probably don’t look like anything special, but the exact lines we used (which weren’t in English) were actually a quote from a children’s book that we read a lot for several years, and this quote has a special meaning to us. It’s hard for me to see my kid upset, just like it’s probably hard for my kid to be upset, and a couple of years ago I found it difficult to know what to say and do in these situations. At one point, when I realized that my efforts to comfort him were just making him feel worse, this phrase came to mind. Over the years, this phrase has developed to a mutual script that means that I recognize that my child is having a hard time but I will remain calm and not try to fix it or comfort him until he comes to me and tell me he’s ready to be comforted or for me to do something to practically help him.

People who hear us use this phrase seem to think that it’s a cute thing I do to help my kid. What they don’t realize is that having a mutual script is just as much about helping me, because I find it easier to remain calm when I know what to say. I don’t get caught in his feelings and it’s a great way to not get overwhelmed myself. When I stay calm, I’m a much better help to my child.

To me, this is what autistic parenting of an autistic child is about. Instead of me feeling guilty for not being able to immediately comfort my kid (who might not even want comfort right away), I do what I need to do to help myself be a good, autistic parent. I don’t try to become a non-autistic parent, just as the help I’m providing for my child isn’t aiming at making him less autistic. I do my best to provide the love, support and help for us to have meaningful lives, where we feel as good as possible as the autistic people we are.

Switching Roles of Pain

My partner hurt his foot the other day. It’s probably not serious but at the moment he is in pain and has to use crutches to walk. To my own surprise this is evoking quite a lot of emotions, and several times a day I find myself thinking about practical solutions in an attempt to get rid of these feelings. When I tell myself “stop it – deal with your feelings” I reach a point where I start reflecting on my experience of vulnerability. It’s hard, but also a big relief.

Seeing my partner in pain gives me an urge to do anything that can eliminate his pain, because I don’t want him to suffer. Unfortunately I can’t do very much about it and I know that in this situation the best thing I can do is to accept that, and not let my incapacity cause me frustration that then becomes an extra burden to my partner. This experience is a switch in roles, because usually he’s the one who has to deal with the experience of not being able to make my pain go away, as I’m the one living with chronic pain. The situation is difficult, but it does give us both a better understanding of the other’s challenges. Because no matter how much we talk about this stuff, we are two different people with two quite different ways of perceiving the world and there are nuances, feeling, thoughts and sensations that aren’t being captured in our words. Not yet, at least.

This situation highlights power dynamics that usually are more obscure. The position I’m in right now when my partner’s new limitations make him more depending on me puts me in a position of power. It exists simultaneously with me having to deal with my incapacity to make his pain go away and with my dependency on his help in my everyday life. I have to deal with being in a position of power and feeling frustrated because of my sense of powerlessness at the same time. I do this everyday (that’s what being a parent is about) but it’s new in relation to my partner.

Reflecting on the changed power dynamics has brought me to face the experience of vulnerability, and that was what this post was originally planned to discuss. As it turns out I had a need to sort out some line of thoughts first, but I’m planning on writing about my thoughts about vulnerability in my next post.

 

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.