I’ve probably said this before. But it’s so important I feel like it needs a standalone post.
I talk a lot about the dystopian hell that exists beneath the shiny surface of the developmental disability home and community-based service (HCBS) waiver system. Because I live in this hell. Because people living in this hell don’t get heard from enough, especially online. Because if something terrible is happening to me, it’s happening to the other people in this system as well. All kinds of good reasons.
But people misuse the horror stories coming out of the HCBS system. They use them to say that we need to bring back the old system. Traditional institutionalization. Or new shiny variants on it like those farm-based “intentional communities” — a weird word considering people don’t get a choice as to whether to live there. Those are still institutions, by the way. So are large parts of the HCBS system. Institutions are determined by who has what kind of power and control, not by the shape of the building or the number of people living there.
To be very, very clear.
The horror stories coming out of the HCBS system all come from the things HCBS has in common with traditional institutions.
So the problem is not that we have moved too far away from traditional institutions, and need to move backwards to make things better. The problem is that we have not moved far enough away from the practices of traditional institutions. The solution is to be less like a traditional institution, not to bring back traditional institutions.
Oh and about that “bringing back the institutions” thing. I know a lot of the larger institutions closed. But not all of them did. It’s not like we just have a world empty of traditional institutions, so “bringing back the institutions” is a concept that doesn’t quite make sense. We’re still fighting to close them.
But we have to replace them with something better, or people just get moved from one kind of hell to another.
And we’re supposed to be so grateful for this that we don’t complain about the things that have stayed just the same as traditional institutions. Which is a whole lot of important things.
The problem is not that we have left traditional institutions behind and need to go back to them. The problem is that we have not gone far enough away from them and we need to become even less like them.
Anyone using HCBS horror stories to promote traditional institutions is coming at the problem bass-ackwards. HCBS horror stories should cause people to want to close all the traditional institutions and make services resemble old-style institutions as little as possible. On a deep level involving power and control, not on a cosmetic level where all you’ve done is slap some new decorations on the walls of the old system.
We got the cutest little cameras hangin’ everywhere, oh yeah…
After awhile you just forget they’re there, oh yeah…
What a perfect place
-Planet P Project (Tony Carey), “This Perfect Place”
Or if you want the entire song, with the lyrics in large subtitles across the screen:
I grew up on that. The album came out in 1984, and the song is clearly highly influenced by the novel 1984. It’s actually part of a very long concept album, and in fact was my introduction to prog rock, concept albums, and Okie singers with recognizable Okie accents who weren’t singing country. (Although when he was asked if he’d ever do a country album, he said “They’re all country songs really” or something like that.) So I heard this song a lot. I won’t get into the plot of the thing, it’s long and complicated and not the point here.
When I was growing up, the idea of cameras everywhere was something out of a dystopia. If someone said it could happen people would probably think they were a conspiracy theorist or paranoid in some way. It was certainly something to be afraid of if you thought about it. Not something normal. Not something people would accept. Something that would creep people out to think about.
These days in a lot of countries there are cameras everywhere, used for far more than the security purposes they’re claimed to be used for, and people are just frigging desensitized or something.
I know people who are very concerned with the role of surveillance in modern societies, who dedicate a lot of their time and energy to it. I’ve never done that. I’ve never liked the situation, I’ve detested the situation, I’ve feared the situation, but I’ve never been able to devote much time or energy to understanding it or doing anything about it or thinking about it much of the time other than in passing or when it affects me or someone I know.
It doesn’t sit easy with me, but even I’m used to it by now. I hate it, but I’m used to it.
How the hell did we get from there to here? I remember a time when nobody would’ve been used to it. I can’t even remember how or when they were phased in. How quickly or how slowly. What changed. What made people accept this.
I used to live in an apartment complex full of cameras, supposedly for security purposes. In reality they were rarely used for security. They were used for everything from finding lost items in the halls, to making sure tenants didn’t use the bulletin boards without authorization. (I ran afoul of that one by posting landlord-tenant law on them. Nothing but a snippet of actual landlord-tenant law printed out. At 3 in the morning. They were gone in an hour.) Which is a free speech violation but they never did care about violations of our rights, it was low-income housing and they pretty publicly didn’t think highly of their tenants. And they were largely used as part of the War on Drugs — catching any drug deals that happened to take place in the halls and evicting people. None of which had anything to do with actual security or safety, the claimed purpose. I can’t ever remember an instance where they were used to protect anyone. There could be one, I just never heard of one. They certainly didn’t use them to catch the people yelling death threats at me and a roommate through our door, during the same time period they were using them to police their bulletin boards. Or the guy running around threatening to murder people with a crossbow. Long story.
Anyway, I just wonder how we got there from here, and why people are okay with it, and how and why it happened, and what happens when everyone who remembers what it was like before is dead.
When Cal Montgomery wrote one of his most famous disability rights essays in Ragged Edge Magazine in 2001, he titled it Critic of the Dawn. He included a quote from a Phil Ochs song to explain the context:
To a nightmare of knowledge, he opens up the gate
And a blinding revelation is laid upon his plate
That beneath the greatest love is a hurricane of hate
And God help the critic of the dawn
I’ve thought a lot about that quote over the years.
I don’t actually literally believe there’s hate under the greatest love in the world. I can see a deep love that underlies everything.
But that’s not the point of the quote.
The point, as I see it, is glamour. At least, glamour always comes into this sort of thing for me.
Glamour is a term from folklore for a kind of fairy magic. It tells us to perceive something different than what’s actually in front of us. A cave may look like a castle. Rotting garbage may smell and taste like a feast. Generally glamour tells you whatever you’re looking at is better than what it actually is. It can show you what you want to see, what the fairy wants you to see. Whatever’s beneath it can just be shabby-looking, or else be sinister as all fuck.
I’ve lived my whole life surrounded by glamour, drowning in glamour, learning to see through glamour for my own protection and that of those around me. Learning to react to what is really there, not to what people want me to see, want me to believe. I had to learn early the difference between the taste of love and the taste of saccharine-coated poison if I was to survive the world.
These are valuable skills to have, and to use.
It’s also dangerous.
It’s also often thankless.
But it’s important to learn to see through glamour.
It’s important to learn when you’re being fooled by glamour.
It’s important to know that even if you can’t always see the truth, there is a truth to see.
I know it puts me at a disadvantage, sometimes even in danger, but in many interactions I can only react to what’s there, not to the glamour. I can’t help this. It’s not a choice I make.
Unfortunately, a lot of people want to be fooled by glamour. It makes them feel safer and more secure. It makes them feel the world is more predictable.
Those of us who have to live with the fallout have other ideas.
How do you tell people that sometimes it’d be safer for you as a disabled person to die on a street corner than get care in a hospital?
How do you tell people that you live in a world where the police aren’t gonna protect you?
How do you tell people that the developmental disability service system is largely a dystopia while everyone involved seems to want to believe (or convince everyone else to believe) it’s a utopia?
How do you tell parts of the disability rights movement that hospice is not the kinder gentler alternative to euthanasia, but rather can and often does become a creepy-ass safe haven for euthanasia and worse?
How do you tell people that you can close all the state institutions and group homes and ICF/DDs and have everyone receiving services in their own homes and still basically have an institution?
How do you tell the Independent Living Movement that nursing homes aren’t the end-all and be-all of institutions for disabled people?
How do you tell people that seeking psychiatric help when you’re suffering terribly may be the worst decision some people could possibly make?
How do you tell people that when people like you get murdered by caregivers and family members, most of your society including the judicial system rushes to defend your murderers before they even know what happened?
How do you tell people that people with developmental disabilities can come from utterly dysfunctional families just as much as anyone else and that relying on family for care, or even information about what care to give, is not safe for a lot of us?
How do you tell people that when people like you are abused, neglected, murdered, it’s not because you’re just so difficult to live with that everyone around you snaps?
How do you tell people that all the systems supposedly set up to protect elderly and disabled people (among others) are just as likely to contain us, trap us, even kill us?
How do you tell those people trying so kindly to convince the elderly woman one bed over from you in the hospital, that she needs to go to a nursing home because she falls, that people fall and die in nursing homes too, and people die faster in nursing homes, and nursing homes aren’t protective against anything, they’re just places to forget about people?
How do you tell people that when it comes what’s directed your way, much of what is called loving, benevolent, supportive, wonderful, perfect, even utopian… is a whirlwind of hate and destruction and death?
How do you show them that things aren’t what they have been taught, aren’t what they seem, aren’t what they expect, pretty much ever?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you make anyone care what’s happening to people like you?
People who are invisible beneath all the glamour thrown on top of you?
I don’t know. I keep trying. I keep hold of my rocks with holes in them and I keep trying, I keep trying, I keep trying. If we all keep believing the glamour, we’ll end up eating poisonous garbage and calling it baklava.
One rule of thumb: Love and hate can be actions, not just emotions. If someone tells you they loved their child so much they just had to at least consider murdering them, that ain’t love, people.
God help the critic of the dawn, indeed.
“Noncompliance Is A Social Skill” t-shirts come from RealSocialSkills.org, an amazing website by Ruti Regan. From the about page: “‘Social skills’ is often a slur meaning ‘teaching disabled people to be seen and not heard.’ I am reclaiming that slur by taking ‘social skills’ literally. Social skills really do exist, and they’re not about fading powerlessly into the background. Real social skills are about learning effective and ethical ways to interact with other people. Some of these skills enable us to stop internalizing ableism, misogyny, and other forms of dehumanization.”
Thank you to Cal Montgomery and Ruti Regan, among many others, for continuing each in your own way to do your best to show the reality underneath some of people’s most cherished glamour illusions. It means the world to me that there are other people doing this.
“Elves are wonderful. They provoke wonder.
Elves are marvellous. They cause marvels.
Elves are fant
astic. They create fantasies.Elves are glamorous. They project glamour.
Elves are enchanting. They weave enchantment.
Elves are terrific. They beget terror.
The thing about words is that meanings can twist just like a snake, and if you want to find snakes look for them behind words that have changed their meaning.
No one ever said elves are nice.
Elves are bad.”
― Terry Pratchett, Lords and Ladies
(Apologies to actual snakes. Snakes are cool.)
The DD service system loves to pretend that it is a utopia ushering us all into an age of inclusion and empowerment and lots of other nice words. The problem is that for a lot of us, far from a utopia, it is a dystopian nightmare.
One way they protect the illusion that it’s all wonderful is by changing the meanings of words. They have a talent for taking a word and turning it into its opposite.
They have a term, for example, dignity of risk. What that term is supposed to mean, is that too often people with developmental disabilities are ‘protected’ from taking risks that other people are allowed to take. We may be forcibly prevented from drinking alcohol, or having sex, in ways that other adults are not. Dignity of risk is supposed to mean that we have the right to do things that agencies might consider risky or dangerous.
Let’s say there’s something that you really need them to do. The agency failing to do that thing will result in you being in danger. You know this. The agency has a duty to do this thing. You want the agency to do this thing.
The agency does not want to do the thing.
So they set up an impossible set of hoops you have to jump through in order to do the thing. When you can’t jump through the hoops, they tell you it is your own choice that the thing is not getting done. If you really wanted it to get done, you would jump through the hoops. The danger you now face as a result of their neglect will now be referred to as your choice and defended with the idea of dignity of risk.
So like the fact that until recently I hadn’t been bathed in a year or two? Dignity of risk. Except this is not a risk I chose. It is a risk they chose for me.
See what I mean? They can take a word, twist it inside-out, and turn it on its head. Until they can justify taking away all your freedoms with language designed to protect your freedoms.
The DD service system is excellent at playing this particular word game. It can be especially confusing if they use the right meaning of the word sometimes, but the wrong one most of the time.
Always, always look for the snakes behind the words. Because they’re there. And in the DD system, they’re everywhere. Every word or term that has an actual meaning that is supposed to protect our freedoms and rights as people with developmental disabilities, has an evil twin that looks exactly the same but exists to take away our freedoms and rights.
Look for the snake words. Just look for the snake words. If you understand how they work, they will give you a window into the dystopia a lot of us are living in.