8:07pm July 13, 2013

➸ Okay, this actually creeps me out more than a little...

southcarolinaboy:

feliscorvus:

jackiesbutt:

xabulove:

sturmtruppen:

youneedacat:

feliscorvus:

A Dutch dementia facility where carers act as shopkeepers to keep an eye on residents attracts global interest.

I don’t normally do trigger warnings but I will say that some of this article literally made me nauseous. Proceed with caution if “real life dystopia" stuff freaks you out. :/

I know dementia isn’t the same thing as autism, but I am 100% sure that this is exactly what a lot of people have in mind when they imagine an “ideal care facility" for people with any sort of cognitive and/or developmental disability.

And that’s not even getting into the whole mess surrounding how people with dementia are viewed and what assumptions are made about them. I know it can be really really difficult and scary for both the person who has it and their family members, etc., but that doesn’t make it remotely okay to treat someone like their personhood is gone because they have dementia.

Nor does it make it okay to lie to them and essentially “trick" them. I don’t necessarily claim to have a solution for safety-related stuff but I am sure there has to be something better than deception. Especially given that the one constant I have seen in interacting with people in varying stages of dementia is a terrible fear that someone is trying to put something over on them, or isn’t telling them something.

But anyway, the part that freaked me out the most was this:

‘Dementia Village’ - as it has become known — is a place where residents can live a seemingly normal life, but in reality are being watched all the time. Caretakers staff the restaurant, grocery store, hair salon and theater — although the residents don’t always realize they are carers — and are also watching in the residents’ living quarters.

Residents are allowed to roam freely around the courtyard-like grounds with its landscaped trees, fountains and benches — but they can’t leave the premises.

Their two-story dormitory-style homes form a perimeter wall for the village, meaning there is no way a resident can accidentally wander out. And if they do approach the one exit door, a staffer will politely suggest the door is locked and propose another route.

Seriously, humans?! Again, I do NOT claim to have all the answers to how to actually address certain kinds of difficulties people might have. But this does not strike me as a step in the right direction as long as it relies on deception. It literally reads like some sort of sci-fi dystopia.

I said this on FWD agrees ago about a much less expansive idea if something very similar. A fake bus stop. I described my own experiences in the process.

I got jumped on hard by tons of people. Who said I just didn’t understand dementia. I think I understand it better than they did. But then they were the same people I described in a recent post, who pretty much believed that it was ableist to question psychiatry.

Anyway I was eventually, IIRC, just told to calm down and stop being furious about not only the fake bus stop but their reaction to it. I have no words. This literally is my nightmare. I’ve had nightmares about this place. Almost exactly.

And everyone thinks their fucking dystopia is really a utopia.

Jesus Christ this sounds like the plot to a god damn horror movie, that this exists and that people willingly send their loved ones to it is terrifying.

Almost sounds like the Truman show, but centered on multiple people and no audience,

It’s probably just me but.

I’m not seeing what’s so horrible about this.

But then again I don’t really understand Dementia that much either.

I don’t think anyone really understands dementia very well. Not even doctors. But regardless, understanding dementia isn’t the point. In my opinion, at least, it sets a bad precedent to say “see this group of people over here? It’s totally okay and a good thing to lie to them and trick them FOR THE REST OF THEIR LIVES because of the nature of their disability".

I don’t know, I guess I just think that there is no disability that automatically revokes a person’s right to the truth about their circumstances. Heck, I straight-out tell my CATS that they can’t go outside because it’s dangerous and they might get hit by cars or eaten by raccoons, etc. Obviously I don’t assume they have a perfect grasp of English, but again, that isn’t the point. I respect them enough to at least be honest with them and I think that means something regardless of how much they understand. And I think you can end up on a slippery slope once you decide something generally unethical is okay because of the population you’re doing it to.

All that said, I’m not saying that the facility described in the originally linked article is somehow worse than murdering or physically abusing the residents or that it’s the Absolute Worst Thing That Could Ever Possibly Happen To Anyone. I’m saying that this kind of thing is just…not the best we as a species can do, and that we’d be making a terrible mistake if we just decided “oh hey, we know how to Deal With These People…let’s lie to them chronically and set up a fake sub-world for them!“ and decided that was good enough. IMO it would be a drastic improvement if the people in this facility already were told that some things weren’t safe for them to do. E.g., I knew an older couple years ago whose (middle-aged) daughter was looking in on them because they were both having cognitive issues. And at one point she removed the knobs from their gas stove so they couldn’t accidentally burn the house down or asphyxiate themselves. But she TOLD THEM when she did this and why she was doing it. IMO, that is much more respectful than making up a story about why there aren’t any knobs, etc. Obviously that is only just one tiny example, but hopefully it at least makes some kind of sense.

[Sometimes I feel bad pointing out things like this as being screwed up when I don’t have something better to offer, but I do think there is value sometimes in being able to say “I don’t know what the absolute right thing to do is, but I sure as hell can tell you THIS IS NOT IT.”]

This part right here:

Especially given that the one constant I have seen in interacting with people in varying stages of dementia is a terrible fear that someone is trying to put something over on them, or isn’t telling them something.

It’s the assumption that these people have no grasp of reality at all, and can and will buy this whole thing. And that would be really horrible, to know you’re imprisoned, and express such, but be told, “Oh, no, no hon. You’re having a delusion. Reality is what we say it is. You’re really wrong,“ when….they really aren’t wrong, and have a better sense of what is going on than anyone would give them credit for. And the added damage of purposely compelling someone to buy into a false reality, rather than work to help keep them in touch with actual reality.

It seems like rather than, “Sometimes people don’t have a firm grasp on reality,” it’s more like, “These people are so far gone, they don’t know anything at all.“ And, I really doubt that’s true, even in the “worst” cases. People with disabilities generally have a lot more self-awareness than others give credit for.

Ugh. No.

And if you are having difficulties figuring out what is going on - I think you need honesty and clarity even more.

Yes that.

And… I think having a cognitive disability and having had people lie to me in order to get me to do things. And tell me I was delusional when I was telling the truth. And stuff like that. I have much better grasp on why this is awful than most people do, even if I could never explain quite why it’s such a horrifying scenario.

I also think there’s this thing. Where people without that disability cease identifying with people with the disability. And they know they would hate it if someone did it to them, but think it’s okay because it’s Those Other People. And that’s horrible in its own right.

But seriously. I’ve had nightmares about places like this. And I DO –just personally – find this kind of abuse more unpleasant than physical abuse. Not more unpleasant than death though, because death is irreversible and this isn’t.

Notes: