5:19am July 14, 2013

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

josiahd:

helloimmrburns:

trappedindoors:

youneedacat:

trappedindoors:

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.

One exit door? And if there’s a fire?

Places like that don’t tend to care about fires. One mental institution I was in, had the children’s building with a shape like a V with the nurses station at the center, a day room on each side of the nurses station, and a locked door at the center, with a hall going off in each direction. The exits, each one a set of two locked doors in front of each other with a couple rooms in between, were at the end points of those halls. As far from the day rooms as possible.

In a fire, what was the evacuation plan? All inmates go to the DAYROOM and wait to be evacuated. You couldn’t get further from the exits in places patients were permitted to go. And none of us were clueless what that many about our value.

That’s cruel and unacceptable. I would have thought that would be illegal.

I’m not sure that I necessarily like the idea, but in their defense, wouldn’t it be nice to have your loved ones with dementia somewhere where they aren’t being overtly treated like they’re crazy? I don’t see how this is any worse than a traditional nursing home, and perhaps better since movement is much less restricted.

See, you’re not realizing that they’re still people. That this is a thing that happens to people with dementia, not a thing that happens to their relatives.

The people who have a problem with this, are identifying with the people it’s being done to.

YES THAT.

This isn’t about what disabled people’s relatives experience. It’s about what disabled people experience.

And narrowing “disabled people” down to people with one specific diagnosis just hides the fact things like this are done to disabled people, especially cognitively disabled people (and especially people prone to being considered not really to be experiencing any of this), PEOPLE LIKE ME, as a whole.

And WTF do you mean not treated like crazy people? This is EXACTLY how crazy people, and cognitively disabled people, are treated.

We are assumed not to understand enough of the world for our experiences to be worth considering.

We are lied to constantly in the name of treatment. Because manipulating us to behave a certain way, is considered more important than telling us the truth.

We aren’t owed the same respect given to nondisabled people.

We are assumed to act in certain ways for reasons that are totally irrational and outside the sphere of normal human experience. For instance, if we walk putt if or home or institution, it’s always assumed to result from disorientation rather than a desire to leave for any of a number of normal reasons.

When questions arise about the ethics of what passes for treatment, everyone is more concerned about our loved ones than ourselves.

It’s assumed that there is no possible way for us to live in the regular world, rather than in special institutions designed for us. Note the only two alternatives assumed – horrible nursing home institution, or pseudo-wonderful fake town institution. Never our own homes with help and support, even though it’s fully possible. (That’s where I live, even though I qualify both for nursing home admission and for ICF/MR admission.)

In fact our families always matter more than us. And so do their wishes for us. Always. We can’t have any say in anything.

And for reference I’m a cognitively disabled former mental patient with several different developmental disability labels given to me over time (autism, developmental disorder NOS, epilepsy), and experience with everything from mild to severe delirium, as well as seizures that impair consciousness without removing my ability to walk around.

So I’m no stranger to how crazy and DD people are treated, and people with dementia are generally treated like a combination of the two. I’m also no stranger to conditions that create severe disorientation, ranging from being conscious but confused (with possible hallucinations or delusions) to unconscious but still responding to things and walking around.

Plus, due to my particular set of cognitive skills and difficulties, I tend to be better able to pick up on what people around me with dementia are and aren’t aware of, than nondisabled people are, even sometimes people who know them well.

So while I don’t have dementia, I have a pretty good awareness of what it is to be treated similarly to how they are, and I have a lot of experience with a wide variety of levels of cognitive difficulty,  confusion, and disorientation.  Including literally blacking out and waking up to find I’ve been trying to pull out a catheter, dial the telephone, walk around, or cling tightly to bedrails while hospital personnel try their best to pry me off.

So while I can’t speak to the literal medical experience of having my brain permanently deteriorate around me. I can speak to the experience of being treated “like a crazy person”, judged to have the cognitive function of an infant, and treated in a wide variety of ways while in a wide variety of levels of confusion and disorientation.  So I have both the medical and social experiences of cognitive disability, and I don’t think there’s something special about people with dementia that makes their need for human dignity any different than any other kind of person.

In fact, there’s no special kind of disabled person that renders treating people in a respectful and dignified manner, useless or counterproductive. But any time anyone wants to treat anyone that way. They will sure do their best to make sure to not only narrow it down to a single diagnosis. But also make it so that magically anyone with that diagnosis who disagrees with how they are being treated, is either too incapable to understand it’s for their own good, or too mild to understand it’s for the good of people with more severe problems. (The too incapable or too mild thing will be waived for anyone who agrees to be treated with disrespect.)

I know how these things work.

And yes I identify with the people it’s been done to because I’m also disabled, because I’ve been treated this way, because I know how wrong it is. I will never understand though why people’s immediate sympathy in these situations goes to everyone BUT the disabled people. Or the thing where if you don’t have the exact same degree of the exact same condition of the exact same type, you aren’t supposed to identify, because dontcha know (insert disability here) is so unique nobody can relate to it without having it and nobody who has it can talk or think about it! Or whatever.

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