A Weak, Valuable Body

The result from image searching “inspiration porn”. 22 pictures, 13 of them are of visibly disabled people who are performing physical activities. Click on the image to go to the search result from Google.

There are so many reasons for why I strongly dislike inspiration porn (it dehumanizes disabled people, it’s used as an excuse to not make contexts and places accessible and it’s used to maintain oppression of disabled people) and there are a number of people who have written and talked about why inspiration porn is a bad thing. However, there’s one aspect that I haven’t read very much about: How inspiration porn tends to value strong bodies more than weak bodies.

I’m talking about the kind of inspiration porn where there’s a picture of a disabled person doing something physically demanding, like climbing a mountain, boxing or running a marathon, with a comment stating something like “She didn’t let her blindness stop her, everything is possible!” or “If she can so can you. No excuses, just do it!”

This worshipping of physically demanding activities isn’t limited to inspiration porn, it’s everywhere. Physical activities, like exercising, are frequently presented as the solution to all sorts of health problems and sometimes it seems to be so holy that the most oppressive, paternalistic ideas are accepted as long as it’s in the name of promoting physical activities. As an interesting example, we have this thread on twitter with the message “Movement is medicine”.

Image of stairs and escalators in what looks like a metro station. The stairs are made to look like running lanes, accompanied with an image of a person running up the stairs. Click on the image to get to the twitter thread where it’s from.

However, when it’s combined with ableism in the shape of inspiration porn, it gets even more problematic. Why? Because it tells us that a weak body is a bad body. That a body that can’t perform physically, doesn’t have the same value as bodies that can. It tells us that disabled people can be valuable as long as we can manage to be physically active. If we’re physically active, we’re excused. Then we’re good disbled people. It becomes a moral aspect of who we are. It’s the same kind of idea promoted in the sentence “Teach your daughter to be proud of what her body can do, not what it looks like”. But what happens when people have bodies that can’t do that much? Are our bodies bad bodies?

My body is weak. It can’t perform. Physical activities make it weaker and make my disease more severe. My body can’t be pushed to obey. My legs can’t run anymore. For walking more than a few meters, I need support. I can only sit up straight for a few minutes. I’m physically weak. The message I get from everywhere I turn is that a weak body is a bad body, and that a physically inactive person is a bad person. I don’t agree with this message, but I get affected by it.

I think fat activism is great and I think that kind of activism is needed for ill bodies, weak bodies and disabled bodies too. Because by now I’ve been ill for several years and I don’t have much muscles left. My body doesn’t only feel weak, it looks weak and it’s starting to really get to me. The other day when I passed my mirror I realized that I’m starting to feel bad about how weak my body looks. This is a kind of internalized ableism and I don’t want it.

Advertisements

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.

 

Sexual Desire and Not Tolerating Arousal

In this post I will discuss sexuality, desire and arousal in relation to the disease ME/CFS. There will be no mentioning of explicit sexual activities. I’m writing this because I’m trying to figure some things out, please do not give me advice on how to practically solve the problems mentioned. If you find this an odd request, you can read more about why getting advice is an issue to me here.

The problems with arousal and ME

The core symptom of ME is that any kind of exertion gives me a dramatic worsening of symptoms called PEM (Post-Exertional Malaise), and my hypermobile joints cause me higher levels of pain for several days, this includes activities like having sex. It’s a problem during these days, since it makes me even more limited in what I can do and the symptoms make my suffering worse. It’s also a problem in a longer perspective, because my ME is severe and I’m going from one episode of PEM to a new one, and I don’t recover completely between the episodes. According to my doctor, this is probably the main reason for why I’m getting more and more severely ill. For every activity that I want or need to do, this is something I have to consider. I have to ask myself if an activity is worth the following PEM and the increased pain.

When it comes to sexual activities, there’s an element involved that makes it harder to make a conscious decision: arousal. Sexual desire and arousal makes me caught up in the moment. Before ME and the worsening of my joint pain, this was a good thing. I want(ed) to be caught up in the moment, that’s one of the nice things about sex. I analyze most things in my life thoroughly, and engaging in activities that make me stop thinking so hard is a very welcome break. But when it comes to sex nowadays it’s a problem, because having sex means I usually end up hurting myself.

The problem isn’t only the physical activity involved. Experiencing arousal of any kind, but especially sexual arousal, means physical reactions like an elevated heartbeat. It means feeling how my body hits the gas and accelerates, something that is more than enough to put me in PEM afterwards. This can happen even if I don’t engage in any kind of sexual activity at all, just the arousal part is enough. This means that I’ve started feeling guilty about not only what I do, but for having any kind of sexual desire. Because desire can lead to arousal involuntarily and that makes my symptoms worse.

Desire with guilt

I sometimes wish that I could stop feeling any kind of sexual desire, because it would make my life easier. Most of the time just the thought of sex is almost impossible to even think, and it is easier then. But then I have days when I’m reminded of that sexual desire is a part of me and it makes me question myself. Am I really as ill as I think I am, as the doctor says I am, when I struggle with my wish for having sex? I know this questioning of myself is just ableism speaking, unfortunately it’s loud enough to make me listen.

I have this idea that people in my condition shouldn’t want to have sex, like I shouldn’t be able to experience sexual desire at all. This in itself is the ableistic stereotype of people with illnesses and disabilities, that we can’t be sexual creatures. It also comes from the idea that severe illness is supposed to be acute, and either you get cured or you’re just counting down do death. During the period of illness, everything is on hold except from surviving. With chronic illness, this doesn’t apply. Life goes on, because living on hold isn’t possible for me anymore. Even though chronic illness is very common where I live, this cultural myth exists and it renders people with chronic illnesses, symptoms and disabilities invisible.

So. I’m not sure where I’m going with this. I’m trying to understand why I feel like I’m doing something wrong just by wanting to have sex, and I guess I just started to give myself some answers.

What gaslighting does

My social insurance agency is trying to find a way to not pay me anymore. Yesterday when I ended the phone call that informed me about this, I started crying. I felt like my thoughts and feelings were being thrown around inside me, impossible to grasp. Within five minutes, I had relived a lot of the fear and shame that I’ve experienced during the last six years. I guess this is what post-traumatic stress does, it sends me back to a number of very frightening  situations without any notice.

Besides from worry about my financial situation, there is an equally horrible thing about this. I have to face all the times when doctors, physiotherapist, nurses, occupational therapists and psychologists made my symptoms worse with their assessments and treatments. Permanently worse. I have to face all those times when they were telling me that I interpreted myself and the world wrong. When they told me that what I was experiencing didn’t really happen. I have to face the fact that all that iatrogenic harm that I’m now living with the consequences of – it didn’t happen according to the people who should bear responsibility for it.

When I had calmed down a bit, I thought about this post about gaslighting. Because I think that one of the reasons for why being ill and disabled and going through a number of assessments and treatments has hurt me so much, is that I’ve been gaslighted all my life. As an undiagnosed autistic, people have constantly been telling me that I’m not experienceing what I’m experiencing. A quote from the post phrases this very eloquently:

Being an undiagnosed autistic can feel like the whole world is gaslighting you. From being told not to be silly, the lights aren’t hurting you, to being shouted at to pull yourself together, when you’re slipping into meltdown, you’re being told every day that your lived experience isn’t real.

This feels very important to understand in order to cope with what’s happening. It is very hard for me to deal with this kind of scrutiny that the insurance agency will put me under, because it makes old wounds start bleeding again. I still don’t know how I will get through this, but I know that reading about other autistic people’s experiences of gaslighting is helping me.