I’m scared, like usual. This time it’s because I’m about to apply for permanent income compensation and this is super difficult to be approved for, meaning that I have to prepare for many years of fighting with lawyers and doctors. It’s a process with a big risk of a permanent worsening of my disease (Myalgic Encephalomyelitis, ME) and it’s a very painful reminder of how vulnerable I am. Since so many people still don’t get how awfully harmful these procedures are, I want to write about this openly. I want to write about it to give people a better picture of what austerity does, since that’s one of the few things I can to to contribute to a political change. However, I’ve come to a point where I don’t think I can, because the reactions I get from people are so painful to read.
One of the most common reactions I get is that people give me advice I never asked for. Bad advice. Advice suggesting that I do something that is either totally inapplicable or very basic, meaning that I’ve already thought of it. This is terribly hurtful and even though I’ve spent a lot of time thinking about why and come to some conclusion, I’m still having a hard time grasping it. The other day though, something hit me: It’s about denied vulnerability.
When people give me advice I didn’t ask for just because I’m trying to describe and understand my reality, I feel invalidated. I’m trying to close in on my own vulnerability and fear, trying to articulate it, undrstand it, make room for it, and all that bad advice become an obstacle to that. Because if your simple advice actually were good solutions, then I wouldn’t be this vulnerable.
The abled world is constantly trying to deny the subordination and vulnerability of people like me, by pretending that disabled people and chronically or long term ill people aren’t treated as bad as we are. When people deny my reality to the point where I can hardly see it myself, it makes it very hard to deal with. I invalidate myself and can’t understand or process my feelings.
I live in a place where a lot of people still think that we have a safety net if you get ill or disabled. We used to have that but it has been crumbled more and more for around fifteen years and by now, there’s really not that much left of it. I grew up being taught that we have a safety net and unlearning that and realizing that no, it’s not me who’s ill the wrong way or not really disabled is a very difficult process. I’m trying to close in on my own vulnerability and make that elusive sense of exposure to danger more tangible and less confusing, but when people deny my reality, it gets too hard.