Was deinstitutionalization a mistake?

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Please note that answering "yes" to this question isn't necessarily an affirmation of the state of psychiatric hospitals or care in general as it existed prior to deinstitutionalization. That said, this thread probably won't be for the "difference, not disorder" crowd.

For those who are able to take an intellectually honest look at their condition, and the ways in which it is manifest across the entire "spectrum", and the (lack of?) care they've received from their families--doesn't it seem that better institutionalization would've been preferable to deinstitutionalization?

I see materials for modern Asperger's schools and I think, "We've come a long way." I imagine a federal tax funding institutions that more closely resemble these schools, run by the same people--people who truly know the best way to work with the "neurodiverse".

You can't make better institutions. They're flawed at the core by their power structures. There's also nothing good that you can do in an institution that you can't do outside of one, so there's really no point in their existing other than to make money for themselves and segregate disabled people.

The problem is that most people aren't aware of the kind of care it's possible to receive in your own home. It's possible totally regardless of how severely disabled a person is, to assist them with everything they need in whatever home they want to live in, whether it's alone or with other people. The trick is to do it without replicating institutional power structures -- otherwise you simply have an institution disguised as a "care in the community" type program. (An institution where each inmate lives in a separate house, essentially.) Additionally, many of the institutions that are superficially better actually do worse things to the inmates than the superficially worse ones -- they often mess with the insides of people's heads more thoroughly than the ones that are merely neglectful/abusive do.

Removing institutions is never wrong. The trick is to replace them with something better. Not "better institutions". But better assistance to live like anyone else in their culture happens to live. This is possible. I'm living it now, despite the fact that I have very little ability to care for myself (next to nothing really).

So no, deinstitutionalization isn't wrong, although it's often implemented wrong. (Removing institutions without adding support, mostly as a cost-cutting measure.) There's no reason at all that a disabled person should have to live with their family, on the street, etc., if they don't want to. People who take institutions as the model of "how to provide appropriate assistance" to people are suffering a massive failure of imagination, and unfortunately it's a failure of imagination that hurts disabled people in the long run so I take it very seriously. There is nothing that can be done in an institution that can't be done better and more safely outside of one.

(Note: There's a difference between an institution and disabled people living together. I live with only other disabled and old people in a building that looks exactly like a nursing home. What makes it not an institution is that there's no institutional power structure hanging over our heads. We're like any tenants anywhere else. We just happen to be around other disabled and/or old people. Totally different. You can also have an institution with only one resident. So it's not at all about the shape of the building, the amount of people, or any other superficial surface trait like that.)

Edited to add: I have very few self-care skills. I am both autistic and physically disabled. I live in my bed pretty much all the time. I need some degree of assistance in nearly every area of life. And I live in my own apartment and receive services that allow me to live here. I see a lot of people with far less problems claiming they "couldn't possibly live on their own", and that's again the failure of imagination as to how it can be. People just take society's word for it that the more care you need, the more you need to be in an institution. And that's totally untrue. The only reason for institutions is as an artifact of a whole lot of historical ableism. It's time for a different period in history.

Yeah. It was a good idea, but they did it in an absolutely sucky way.

Kind of like... "It's a good idea to feed my cat. But it's a bad idea to feed her nothing but tuna."

When you give one person absolute control over another, very vulnerable person, you create a system that's so open to abuse that it's just not redeemable. It's very much like slavery, in fact--read back through the history; many slave owners were quite fair and kind to their slaves--but it was still slavery, and you couldn't get human rights for the slaves until the system itself was abolished.

I am not sure what you mean by "intellectually honest," since I tend to see such phrases use as a means to signal a foregone conclusion.

My honest reaction is what others have said: I don't know many (I can think of one person whose blog I read, and who is not in the US) who have had a positive experience being institutionalized, and I know of many who had awful experiences and some who came out in worse shape than they went in.

A friend of mine who has many of the same conditions as I do and a very similar history to mine ended up institutionalized for a year with a series of misdiagnoses. They certainly didn't endorse the experience.

One problem also with looking at people who say they did okay in various institutions, is that often it's a very qualified "okay". Like there have been institutions that at the time I said were okay. In my case, this was either (a) repeating what other people wanted to hear, (b) brainwashing, (c) Stockholm syndrome, or (d) thinking a place was good because it wasn't the Really Really Bad kind, at least not superficially. And in all cases it was generally not fully understanding the damage that was being done and had been done to me in such places. I had to be out a long time to appreciate that, even though I wasn't "in" as long as some people I've known (actually I can't calculate the exact amount of time, because it depends on a precise definition of institution, and such definitions don't exist, but anyway that's pretty irrelevant to my point). So... yeah. Even when someone says that they're somehow enjoying the experience, there's often an element of coercion or confusion about the matter. I've only very rarely met people who have been in institutions, and then out (and in a really decent place) for long enough and in the right environment to repair the damage, who will actually say they liked it. And even some of them will change their minds if they get a taste of institutionalization after they've actually known freedom. So it's a tricky topic when someone says that they "liked" an institution, it's hard to know exactly what they mean (and it's hard for them to know exactly what they mean).

What really irritates me in the OP though is the implication that somehow the more disabled (in conventional ideas of disability) someone is, the more they "really need" institutions. That's just not accurate at all. If that were accurate... gah. I don't even know how to explain if someone doesn't understand it already. Suffice to say, I've known people diagnosed with profound intellectual disabilities, who not only lived outside of institutions but owned their own homes and had as much control over the services they received as their communication abilities allowed. Same with people with severe physical impairments. And of course I have easily enough impairment to qualify both for developmental disability institutions and for nursing homes, and I can live outside of institutions because of the services I receive. If people with severe impairments had to be in institutions (or with family), then that's where I'd be. But I'm not. And that means something.

And what bugs me the most about this is that the USA is in a state of crisis where people are trying to cut services right and left. They would love to build institutions and put us all in them (even though the overhead makes that more expensive almost always than services on the outside). Trying to drum up support for institutions is a good way to threaten the lives of people like me.

And what most people would call "good institutions"... I've literally had nightmares about those. More nightmares than I've ever had about the very obviously physically abusive or neglectful kinds. It's hard to explain to someone who's never had the loss of freedom in that really particular way. Where people treat you like an infant -- at best a nice infant -- and they pretend to let you do what you want, but really subtly guide you (in ways that they don't think you're capable of noticing) to do what they think is best for you. And please don't tell me that the people who really belong in them "really aren't capable of noticing" -- really when you're treated that way, you notice, it doesn't take a whole lot of cognitive skill, and most people labeled severely autistic have much more cognitive skill than they're given credit for.

What we need to be doing -- anywhere they don't exist -- is building real, responsive services that actually cater to the needs of the autistic person rather than just the desires of the staff or parents. That can take place in whatever environment the person wants to live in (including every non-institutional option given to anyone else in that person's culture). That don't mandate institutions or become more institution-like the more severely disabled you are considered to be.

And for places that actually have that (where I live is mostly like that with a very few very small institutions, in terms of DD services anyway), we need to be defending those things as well as making them better. (And where applicable, replacing the institutions that do exist with people being able to live where they want.)

But we just don't need people trying to reinvent the wheel. The power structures of institutions basically guarantee abuse by all but the strongest people (who most institutions then spit out of their employment). Not always the obvious kinds of abuse, but abuses of power nonetheless. We need to be looking for things that lack this power-over structure.

In the end it would be best if disabled people's needs were as integrated into society as the needs of nondisabled people. Until then, we'll still need separate disability services, but institutions are a step backwards, and "good institutions" are a step backwards while thinking you're stepping forwards and that's even worse. (It's much much harder to combat abuses of power in people who are convinced they're doing the right thing and very emotionally invested in it.)

Fair points, and I shouldn't have said positive so much as reporting a less negative experience.

I saw the possible meaning there but didn't really comment on it -- basically often when people use "intellectually honest" in this context, they mean "If you were intellectually honest you would agree with me." But it's always impossible to tell every possibility of what someone could mean, so I tend to just ignore it when I see things like that (unless I'm annoyed enough).

At this time, in the US, the last thing we need are countless new institutions built on the principle of good intention. Institutions that will cost millions of dollars annually to operate. Institutions that will allow kickbacks to politicians by private firms, which will cost the tax payer even more. The government will let the private sector build and take over which will mean a massively inflated pricetag for the government and the taxpayers! It's happened time and time again.

It's just a bad idea, all around. It will be more expensive, even though it seems like it's the other way around. It's not.
Just think of a school and how much that costs to run. Or a prison. An institution (like the old fashioned 300 + bed kind) would cost more than both of those and we can't even fund them. How could we possibly fund more of the same only costlier?

No. I don't think that it was a mistake. Look at all the freedom and liberty that most of us have, because of it. We can get jobs, live on our own, get married and have children. A lot of us wouldn't have been able to do that in the 50s, because a lot of us would have been shoved in institutions instead.

Even the little ones like nursing homes are surprisingly costly. Not that they'd be good if they really did cost less. But they don't (usually) so it's just one more thing against them. I'm constantly having to fight ending up in one so this is really close to home for me. If I ended up in one I'd likely die much younger. Not good.

There's lots of new tech out there now that can help people live on their own, a great deal more cheaply than in institutions, and with a lot less need for human intervention. I think if I needed daily help in my house, I'd much rather have it be done by a computer system or something of that sort than by a human being, because I can tell a computer what to do and a computer can't look down on me or think it knows better than I do.

Right now it's focused mostly on seniors; like automatic sensors that can detect if you've fallen, and trigger an "Are you OK" signal, which if you don't answer or answer "no" to, will send an ambulance... Or a stove-minder that will shut off your stove if you leave it on; or a computerized medication dispensor that stops you from taking your meds more than once and reminds you to take them if you haven't. That kind of thing. I like that concept. Technology could really reduce the need for human aides, and help change the public perception of "disabled" from "must be helped by other human being; subservient to those who help you" and get people thinking of disability as more along the lines of "uses additional devices/services in order to compensate for disability". I think the control of the system needs to be kept firmly in the hands of the user, though; otherwise you risk creation of an institution by remote-control!