Sometimes (almost all the time), I feel like such a bad parent. I’m in bed all day because of my disease and there are so many things I don’t do as a parent. I don’t take my kid to school. I don’t cook. I never take him anywhere, since I can only leave my home during very special circumstances.
But what’s worse than all that is that I can’t handle my own feelings when he’s upset. When certain things happen to my kid, I relive all the times it has happened to me and my world falls apart. When my kid is overwhelmed or when I can tell that he’s not understanding a situation and therefore has a hard time coping, I feel the same way. Sometimes I fake that I’m calm as good as I can, other times his other parent is with him and then I stay in my bedroom and feel like shit.
Because of my disease, I don’t do much parenting at all anymore. I feel guilty and ashamed. I think about my kid all the time and try to solve things like how to find a good school and what not but for too much time, I’m not there.
I’m so sad that I didn’t get a chance to understand myself and learn how to help myself as a kid. Because when my kid is upset, I’m still a kid. Partly because of all the things I never learned as a kid. I didn’t know what it felt like to have your experience validated as a kid. I didn’t have anyone to ask for guidance on how to deal with all the stuff you deal with as autistic. I never felt safe.
I want to comfort my kid when he’s upset but just like me, he runs to his room and slams the door. He doesn’t want to be comforted when he’s too upset and of course, I have to respect that. But since I never allow people to comfort me either, these kind of situations turn into an emotional chaos to me. And I feel lika I’m the worst parent in the world.
As a person with a bunch of chronic conditions I’m sometimes told by so-called experts that I should do fun and meaningful things, even if it leads to a worsening a symptoms. This is especially common among healthcare professionals who work with people with chronic pain. People who advocate this approach to dealing with chronic pain seem to think that the positive outcome of doing something meaningful will be greater than the pain, and that will make it worth it. Avoiding things that trigger more pain is called avoidance or fear and is for some reason always considered irrational.
I wonder how much damage this idea has done to me. Even though I have never really believed it, it has affected me. It has made me think that there is some piece of truth in it. It has made me harm myself.
Yesterday I met with a friend and her kid. It’s the first time in a year that we have met. Actually, it’s the first time in a year that I’ve met with any friend away from keyboard. The circumstances were made to be as gentle to me as possible: I took breaks and rested, my partner did all cooking and practical stuff, we were outside in the garden to keep the noise level with two kids down. We had a great time. Still, I feel so bad today. My tachycardia is worse, fever is up, pain is increased. My sensitivity to light, noise, movement and moving visual impressions is horrible. I can’t brush my teeth because my muscles are too weak and sore to hold my electrical toothbrush. I can’t be in the same room as my kid. I can’t be outside. I’m isolated in a bedroom with curtains down, needing help with almost everything but can’t tolerate to have people around me.
I had a great time yesterday, but was it worth it?
No. It wasn’t worth it. It wasn’t worth this.
I knew I was going to pay for seeing my friend and her kid, but I thought it was going to be worth it. I don’t know exactly how I was thinking, because I knew I was going to pay by feeling like I am today. There’s no surprise going on here. So why did I think it was going to be worth it?
Because a part of me still can’t let go of the ideas planted in my head by healthcare professionals who have no clue about how bad many symptoms get when I exert myself. I know they are wrong but I want to believe it. I want to believe it because I don’t want to have reached the point where I only see my kid, partner and healthcare professionals AFK. But it seems like I have.
How does it come that so many healthcare professionals seem to think that their job is to make people accept our situations by over-estimating our capacity and pushing ourselves, instead of learning to truely accept the limitations we actually live with? How does it come that these people, who brain-washed me into thinking that harming myself is a good thing, never have to take any responsability?
I know the answers to these questions. I just have a hard time believing that it’s true.
(Update: With ME the thing where healthcare professionals push us to over exert ourselves is especially bad because we don’t always recover, we risk permanent harm. I’m well aware of this but just realized that I don’t make it clear in the post.)
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”.
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.
Like a lot of chronically ill and disabled people I know, I live with daily reminders of my vulnerability. I’m painfully aware of how vulnerable I am, and how I have to fight for autonomy and integrety.
Every night, when I’ve crawled underneath my weighted duvet, a longing comes to my attention. It’s the longing for being able to share my vulnerability with someone without holding back. Doing that means that I have to face all the shame and internalized ableism it comes with, and I need to feel very safe to do that. I need to know that the person I share this with won’t abandon me. I need to to know something more, feel something more, but I don’t know exactly what it is.
There are people who I could try this with, but I don’t know how. All I know is that I long so hard after to give in to the fear that the sense of vulnerability that’s permeating everything that is me is causing. To stop pulling myself together and trying to solve everything.