I’m thinking a lot about being disabled and needing help and how much oppression that comes from that help. People tend to think I’m lucky since I have family members that want to help out, but I don’t always feel that lucky. Because when people offer to help, it turns out that they really don’t want to help me, they want to enjoy themselves. For instance, they want to take my kid to places he doesn’t want to go to or will feel really bad from. They want to play and be that funny person, no matter how much I say that it won’t work out. Instead of asking me what kind of help I want, most people around me offer to do something (or do it without asking), and when I say no they get upset. I’ve told the people who keep offering me “help” that I prefer if they ask me but for some reason that’s not possible to do.
Sometimes family members have helped out by baking bread (we have celiac disease and the gluten free bread from the store is really not very tasty so we bake our own bread) or doing something else practical that I’ve asked for but somehow this very often means that the person who helped me starts having a lot of opinions about how I live my life. One person in particular acts like she’s entitled to make decisions for me, every time she has helped me with something (I’ve written more about that here).
Also, I’m happy when somebody wants to make my life a little easier, but this expected gratitude is very uncomfortable. I do appreciate when people are considerate but that’s something completely different from when people do something for me and expect me to be submissive in return.
There are exceptions. I have people around me who actually ask what they can do for me. People who ask if I want to meet up and ask how we can make it possible, for instance. Some people in my family that don’t go on about meeting in big gatherings and really take action to accommodate me and my kid, without trying to interfere. That kind of help I truly appreciate.
But I really don’t want to be submissive and let anybody control me just because I live with a lot of disabilities. That’s not help or support, it’s oppression.