Content: This post includes thoughts on safety, fear, threats and abuse related to ableism
I hope I’m just having a bad day. Like, I really, really hope that this will pass soon.
Because I’m falling.
In some aspects I’m safer now than I was before, and that’s great and totally terrifying. When I’m finally a little bit safer, the thought of going back is so scary that I almost wish the temporary safety away. Because I can’t go back.
But I will be unsafe again soon. One of the bigger threats is on its way back. There’s nothing I can do about it. In a month, it’s starting again.
I can’t. I can’t do this.
My mind is preoccupied with the idea of ever feeling safe. People think that my highest wish is to not be ill anymore but it isn’t. Because even if there’s a cure for ME one day, I could still be ill again. I will still be disabled. In an ableist world, that means being very unsafe.
I just want to feel safe. I just want to live a life without the constant threat of abuse.
Content: This post mentions anxiety and discusses processing problems and chaos in relation to poor information about disability services.
I’ve been approved for some disability service. It means that somebody will come and do some cooking, cleaning and laundry for me. Earlier today I tweeted about how much anxiety I’ve had ever since I found out that I am approved for this help, and in this post I’ll try to explain one of the reasons – processing difficulties because of lack of information.
This is disability service, or more correctly a symbol for disability service. I will get help with cooking, cleaning and laundry.
I know what kind of services I’ve been granted but, there is information I don’t have about this service. Some of the information I don’t have can be articulated into questions, like “are there time limits for each task?”. However, with most of the stuff I don’t know it’s different. All I know is that there are things missing to create a whole image in my mind, like pieces that connect the known pieces to each other. I know that I don’t understand how this service is supposed to work, but I don’t know what information I’m lacking and therefore I can’t articulate questions about it. The red color in the first picture is like the glue that creates a connectcion between the other pieces – but it isn’t there. The pieces of information I have are like fragments that are not properly attached to each other because of the missing information.
People seem to expect that I’m supposed to understand the information I have and ask about the things I don’t know, but to me it doesn’t work like that. Since there are pieces missing, I can’t process the whole picture and I don’t even understand the information I have. I can process the things I know as individual fragments, but that doesn’t give me a clear picture of what it’s going to be like to get this help. Instead, trying to think about this disability service is like trying to make sense of a chaos. Pieces of information are tumbling around. My brain works constantly trying to process and understand what it will be like to have this help but all it does is draining me of energy and causing anxiety.
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.
Content: This post includes mentioning PTSD, vulnerability and harm done by paternalistic behavior and lack of respect.
My ME (Myalgic Encephalomyelitis) has become worse during the last year and I’m therefore applying for help with some everyday chores. The days when I’m not able to make myself a simple snack are becoming more and more frequent and my partner can’t take care of me as much as needed, because he has to take care of our kid and work.
Applying for more help has made me think a lot about what I need to make this help work and it’s clear to me that I need people to be very careful about respecting my boundaries. If somebody is going to help me, I need that person to make it their first priority to make sure they help me with what I communicate, in the way I need it to be done. This might sound so obvious that it’s redundant to state, but in my experience it isn’t.
During the last years so many people (healthcare professionals, my mom and people from my social insurance agency) have demonstrated that they don’t respect my boundaries at all, and I’m hurt by it. For some reason it seems to be a common misunderstanding that when you are helping a disabled person, you are automatically entitled to the person’s private information and to run the person’s life. It doesn’t matter if I tell people that their ‘help’ is actually just making life more difficult to me, just by claiming that they are trying to help me they seem to think that they are free to do whatever they feel like.
When I say that this paternalistic behavior has hurt me, I mean that it has done some serious harm. I’m scared of healthcare professionals. I have nightmares and I’m hypervigilant in most situations where I need help. A big part of my PTSD stems from situations where I’ve been a patient, a child or needed help in some other ways. Also, healthcare has made my ME more severe by harmful diagnostic procedures, tests, assessments and treatments and nobody is willing to take any responsibility for it. Healthcare professionals act like it’s my fault that I have such a weird disease that they refuse to learn anything about, and having EDS and being an undiagnosed autistic doesn’t exactly make me less weird to other people.
When I think about how I could make receiving help work (and not just worsen my ME and PTSD), I think about how I need to have autonomy. How I need to be in charge and by getting practical help I become a subject that cares for myself. I don’t want to be taken care of, I just need people to practically do what I can’t do. I need my knowledge about myself to be respected. I need to be seen as the expert. Given the background I just accounted for, these needs (that are a lot about restoring my integrity and sense of humanity) make a lot of sense to me.
Then, every evening as night falls and I’m waiting to fall asleep, something else surfaces. I stop thinking about practical solutions, and I’m too mentally exhausted to think one more analytical thought. Then I’m just longing and hurting. I’m too exhausted to defend myself against people who are not respecting me. I’m ashamed to write this but then I want to be protected. I long so hard for someone to comfort me, and it feels so totally impossible to ever allow it again. My deepest, most shameful desire isn’t sexual – it’s about feeling safe enough to allow myself to be vulnerable in somebody else’s presence.
Initially, these desires seemed contradictory. Daytime I fight to defend myself and avoid situations that make me vulnerable to other people’s harm. At night, all I wish for is to be able to be vulnerable again. However, these aren’t contradictory needs. It hit me last night that being deprived of things like integrity, respect and a fundamental sense of safety means I was also deprived of the privilege of trusting people. Longing for autonomy and longing for vulnerability isn’t two different things, it’s two different sides of the same need: safety.