I’ve had the same experiences in psychiatric hospitals. They ignored me when I had severe and painful reactions to medication, and I find it very interesting that they finally did something when my parents were visiting and watching. They thought nothing of just walking into our rooms, so patients all went into the bathroom to change clothes. If you got upset, you had two “choices”: Take meds or have them forced into you. Not to mention being “body-searched,” where a female staff member just comes up to you and puts their hands up your shirt and down your pants.

But I completely what you meant about the most disturbing thing: Their power. Other people you can remove yourself from without consequence. These people control your food, clothing, shelter, and bodily integrity. And they’re the “healthy, full people” while you’re the “sick, half person,” so their opinion is automatically more right. They can say what they want anytime, while you are forced to pick and choose your words carefully to avoid “sending the wrong message.”

I have to admit I reacted more like Book Girl said she did than actually being angry, I just wanted to be angry. But I’m glad you were able to stand up for yourself here.

Yet I don’t mean to imply that she can always act as my bulldog. The negative side is that, due to the influence of her profession, I feel no embarrassment or entitlement to privacy with psychiatrists/psychologists or people who temporarily take on similar roles (such as school advisors). I take a lot of meds, most of which are necessary because of health issues, and have no ability to empathize with people who find taking prescription drugs humiliating or unnecessary.

If I were not lucky enough to have little exposure to institutions and predators, I could easily have been exploited into revealing private information or accepting medical abuse.

Of course, long-term, getting people to view developmentally disabled folks as fully living, fully human PEOPLE will fix this. But in the short-to-medium-term, you and millions of others are still stuck in this nasty situation. What a pile of excrement.

That is why it should matter even more. I don’t know how clear I am, so much of this post is so familiar in so many ways, and I find it worrying that my gut reaction is to curl up in a ball and shake and disappear inside myself, when I know I should be angry – it is easier to be angry about things when you have a distance from them. A few weeks ago I was harrassed by a man at the local shopping centre telling me, “there will be no wheelchairs in heaven”, and then when I told him to leave me alone, he started standing over me sitting in my scooter and yelling in my face. I was angry about him inflicting his religious weirdness on me, but it took several hours for me to realise – hey, he was PHYSICALLY intimidating me. Because I’m so used to it.

I’m still trusting your judgement/decisions though.

I’ll stop hogging the comments…

Thanks Andrea. I was trying to figure out why/how this situation could come up. The only times I’ve had to really truly worry about something in the way amanda baggs was talking about was during my experiences with institutionalization (which were better and lesser than many people’s, but still pretty awful). I was really confused about how she could be in that kind of situation with a staff person inside her own home.

However, now that I’ve read your comment I think the reason why they don’t see it “as a positive sign of someone who knows what they need, want, deserve, have a right to” is because they don’t view amanda baggs as a client/boss. Many of them must see her and the other people they provide services to as chores, problems, or maybe a source of revenue and their “boss” is the agency that helps organize stuff like that. And I’m assuming the agency gets its funding from various government sources and feels justified in doing whatever they want with it.

So I think what we need is reorientation in how service providers see themselves. Some really forceful presentations on ethics etc as part of training would help, but think the biggest problem is the actual way the revenue and such is set up. Like ideally the hierarchy works something like this:

Client—->Agency (if applicable) —-> Service workers —> Government (including funding)

I have the government on the bottom because ideally the role of the government would be to serve the people rather than make them do things.

And what we have now is:

Government—> Agency—-> Service workers—-> Client

Basically from someone’s in amanda baggs’ position, there is this blobby thing on top of her and she has is having to deal with it all at once. While that’s going on, everyone above her is in a position that makes them view her as a liability or chore, unless they’re just very moral people and are able to overcome that.

Does this make sense to everyone/anyone? I guess if it does the next question is how we fix this. I’m afraid it might involve establishing a new government, but I’m open to other ideas.

And, there should be more freedom for people to ask that certain staff not come into their homes without having to fear consequences such as gaining a reputation of being a client who turns away staff. Because having that kind of reputation shouldn’t be seen as a negative thing, it should be seen as a positive sign of someone who knows what they need, want, deserve, have a right to, including safety and comfort with the people who are supposed to be taking care of them.