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.
This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support. From the Disability Integration Act website:
The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
Credit for most of these goes to Cal Montgomery. His dogs Murdo and Erastus are featured too. Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.
What I like about these is they show how simple and normal it is, what disabled people want. And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals. They might see things about disabled people they wouldn’t otherwise see without the analogies being made. For real.
But seriously my favorite is the one about being able to poop whenever I want. That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.
And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint. In fact, the more readily we accept these things, the more we are praised. And then we lose our freedom.
And usually we die faster too. Not that anyone notices. They think we die because we’re elderly or disabled. Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions. Institutions kill people faster. All institutions, whether large state institutions or small nursing homes. They reduce our lifespan and nobody notices or cares. That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.
There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.
There is a lot that happens in institutions that is bad and doesn’t need to happen at all.
There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen. Anything you hear different is a lie used to keep institutions open.
Institutions are our modern equivalent of Victorian workhouses.
Workhouses were institutions for poor people. Think the sort of thing Charles Dickens wrote about. They had terrible living conditions and people died in them. Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution. People considered workhouses necessary. People considered workhouses natural. They were neither one. These days, people consider workhouses an atrocity and a thing of the past.
But we still have institutions for disabled people, and they are everywhere. Some of them are large and obvious, others are hidden in plain sight. But all contain the same thing: A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom. If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”
Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature. Even if it’s entirely “community-based” otherwise. Real community-based services let you live wherever you want to live.
And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers. Even some that let you stay in your own home. If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements. It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.
Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.
I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.
The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.
I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.
I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.
Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.
The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”
This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster. The house protects me and makes me aware I am protected, even from my own fears.
I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.
Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality. All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.
I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.
Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.
But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.
You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.
It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.
Participating in such a thing isn’t trivial, no matter what your role. Maybe you make the policy. Maybe you enforce it. Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless. Maybe you persuade us to give up ourhomes and move somewhere else. So many things you could be doing, but it means you bear some responsibility for somethin terrible. You can’t escape that. I can’t sugar-coat it for you.
This is my home.
That’s all there is to it.
This is my home. And anyone who participates in trying to take it away from me, is doing something terrible.
Because this is my home. Living here is my right. Having the assistance required to live here is my right. Nobody gets to chaange that. And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home. They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located. This is my home, you can’t just exchange it for another and pretend they’re the same.
Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now. Lois Curtis fought for this. Elaine Wilson fought for this. They were two women with developmental and psychiatric disabilities, and don’t forget it. They are what the Olmstead decision was all about. Everyone has fought for this and I will not give it up lightly. I will fight for it for me and for everyone who comes after me. And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me. I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.
This is my home. You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary. I know better. I know my rights. THIS IS MY HOME. And this is how much I have to lose. And more. I will fight to stay here with everything I have in me, and never stop fighting no matter what happens. Because it’s not just my home at stake. As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional. THIS IS MY HOME.
I grew up on stories of a great-grandma who slept with a hatchet under her pillow.
She was afraid the sheriff was coming for her, you see. This was supposed to confirm she was crazy.
Maybe she was crazy. I don’t know. But the thing is, the sheriff did come for her.
And he took her to the state mental institution.
And she eventually died there.
So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.
Society treats institutionalization as the inevitable result of disability. It’s not. It’s a widespread, ongoing crime against humanity. Just because it’s socially acceptable doesn’t make any less of one.
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.
For part of my childhood I was one of those “scary” kids. I was sent to a residential facility, psychiatric institutions, special ed, other things. I’m glad nobody turned a camera on me in my worst moments. I’m glad there is no video of me fighting with anyone, being taken down (for any reason at all or not), screaming for hours in restraints, going to therapy, none of it. I’m glad the media didn’t take me out of the violent context I lived in and paint me as the “problem person with the problem”. I’m glad the media wasn’t there. I’m just glad they weren’t there. I worry for these children. I worry for children like these children.
I worry for children like the child I was and the children I knew who overlapped all the “problem child” systems that blend together at that age — child psychiatry, developmental disability, troubled teen, special education, juvie, foster care.
All of us were surrounded by extreme violence.
All of us at times reflected that violence whether in on ourselves or out towards other people or both.
We were children trying to survive environments we couldn’t cope with. Every one of us. The system failed all of us, and we all knew it. Some of us survived, some of us didn’t, none of us came out unscathed.
All of us were singled out as the problem kid with problems, ignoring what surrounded all of us: violence, hopelessness, abuse, neglect, despair, bullying, torture, confusion, oppression.
What the media is doing to these children is its own form of violence. It is an invasion. It is telling our stories the way they see us, not the way we are. It doesn’t ever show the whole picture, and focuses on us as mysteriously confusing dangerous burdensome people with possibly no future unless we can have it bludgeoned out of us by a brutal system that everyone wants to get us into.
I wouldn’t wish it on anyone.
Luckily, a lot of us make it out the other side. A lot of us grow into responsible caring adults. If we’re given the chance, the opportunity, chances and opportunities that are the exact opposite of what you get in the system. It’s hard, it’s a rough road, a long road, but it can be done. I’ve done it. I got help not from the system but from other people who’d traveled that road before me. I owe everything to them.
An interview of Noreen, a woman with a developmental disability, by Dave Hingsburger, about her time in institutions:
“Do you remember your first days there?”
“Do you remember being happy, being frightened, being sad?”
“I think the first thing I felt was lonely.”
“That must have been hard.”
“But it’s not a nice feeling, to be lonely.”
“No but that’s pretty much all I ever felt, from long before I went in there. So it was just the same really.” Pow! She moved from the community to the facility and it was the same. It is not a place. How do I describe the thoughts that poured inside me and all around me. Noreen stared at me as it was clear that something was happening inside me. I just knew, all of a sudden knew, that one of the errors we had made was assuming that HOME WAS A PLACE. And it isn’t, it isn’t at all. By focusing solely on community living, we focused on COMMUNITY and not LIVING. By focusing on community, we focused on the popular definition of community being a place that was outside a facility. A community is not a place. It is a sense. It is a feeling. It is belonging. It is having anchors. It is being wanted. It is being necessary. I thought that I was hearing about Noreen’s institutionalization as if it was the first time she was segregated. Noreen’s life was made different not by the fact that she was placed behind walls, but because she was of the type that people thought should be placed behind those walls. Noreen began her journey the first time she was turned down for adoption because of who she was. It means that we do not move a person from a place to a place as this ensures failure or even worse CONTINUANCE OF THE SAME THING; we need to move a person from a situation to a situation, an attitude to an attitude. I’ve made so many mistakes.
“Are you alright?”
“Yes, sorry Noreen, but I have so much to learn from you and sometimes the lessons are hard.”
“What did you just learn?”
“I don’t know if I can explain it.”
“Noreen, when you said that you felt lonely just like you always had, I think I realized that the problem isn’t where a person lives but how a person lives. I think I always just saw the institution as a bad place and the community as a good place. Just like the black hats and the white hats in the movies.”
“I know. We’re not supposed to think this, but sometimes people get mad at me because I say that you don’t just move people out of the institution but you move them to somewhere better.”
[I Witness: History and a Person with a Developmental Disability by Dave Hingsburger.]
When people find out the dystopian hell that exists for many of us underneath the utopian dream of community-based developmental disability services, a lot of them respond by saying we need to build institutions again. Sometimes they think they can make the institutions better. Sometimes they don’t bother with that (hello, VOR, nice to loathe you again). They think there is something wonderful or protective about institutions that has been lost. That is not true. Anyone who uses my words to promote institutions is misusing my words, stealing them, twisting them.
The problem is not that we have moved too far away from what institutions are.
The problem is not that we just haven’t found the magic formula for the perfect institution yet but these new ones will be wonderful.
The problem is that in most of the service system we have barely moved away from what an institution is, at all.
An institution is not created by the shape of the building. It’s created by who holds the power, and what kind of power they hold.
Many community-based service agencies for people with developmental disabilities work like this:
You take what a traditional institution was.
You take all the people out of it so that we’re all living in individual apartments or houses.
The same people at the top have all the same kinds of power.
The same people in middle and lower management have all the same kinds of power.
Staff are still staff with their combination of lack of power within the agency and total power over clients.
And because all of those things are the same, lots of things don’t change at all, or don’t change nearly enough.
I will fight to the death for my right to live in my own home. For Medicaid. For the HCBS waiver programs. Not living in a traditional institution means the world to me.
But I will no longer pretend that my agency isn’t institutional in the way it uses power over people like me.
I will no longer pretend that I am not trying to scrabble together some kind of meaningful life living on the ragged side of a nightmare.
I will no longer pretend that what any of us roughly 670 adult HCBS waiver clients in my particular agency get is good enough for any of us.
Because if we all pretend these things, if we play along with the story we’re supposed to tell, more people will live this story.
And more people will die.
So no. Don’t frigging build institutions because of what I say.
Change things so that they’re less institutional. Not more.
And no you can’t build a magical institution that isn’t an institution because you waved your hands and cast a spell that called it an intentional community. That’s glamour. Or in other words bullshit.
People with developmental disabilities have to live with the consequences of your bullshit. That’ll be another post, or three.
But you can’t just change the surfaces of things and expect the insides to change.
You have to change the insides.
And while I will never deny the importance of what people have done. The ability to live in my own apartment. All these things that are meaningful to my survival. The amount of people with developmental disabilities, and sometimes families, who have worked hard to get me the good parts of the life I have.
I also can’t deny that the way many agencies pull this off is more a surface change than a deep change.
And without a deep change, you won’t get anywhere near enough change.
So when I tell horror stories, don’t think “Institutions are better.” Think “We haven’t moved anywhere far enough away from institutions yet.” And keep moving away from institutions. Because our lives depend on it.
And listen to any person with a developmental disability you hear, whether it’s Noreen or me or anyone else, who says our lives are not getting better or our lives are not getting better enough. Because there’s a lot of pressure on us to play shiny happy brochure-ready client brimming over with wonderful changes, and if any one of us is saying otherwise, you want to listen carefully.
In California, there a lot of developmental disability agencies for supporting adults. Like a ridiculous number. So I’ve seen pretty much the best to the worst and everything in between.
When I moved to Vermont, I knew right away from all the signs I saw, that the developmental disability agency I was with was pretty middle-of-the-road. Some parts of it had things in common with the worst ones I’ve seen. Some parts were better. It’s a huge agency and there’s a lot of variation. But I certainly saw no signs that it was especially good as agencies go.
Yet as soon as I got here I had this entire cheerleading squad of agency staff telling me how wonderful and amazing the agency was. It was weird. I tried to get specifics. What makes it so wonderful? They just told me it was utterly wonderful. I didn’t believe them. I wondered if I’d just joined a cult.
Finally I asked someone to break down — specifically — what made this agency so good.
She said, “Well it’s better than Brandon Training School!”
I said, “That’s setting the bar awfully low.”
Brandon Training School was the state institution for people with developmental disabilities in Vermont. Like all state institutions, it was hell on earth. Larry Bissonette, a former inmate, describes it this way:
Nasty residential better for growing vegetables than people Brandon Training School.
He also says:
Many years ago most of my existence was spent behind the institutional walls of Brandon Training School. I am free of those walls now but attitudinal walls are still very much placing large, enveloped by ignorance, jackets of segregation around the lives of people with disabilities and especially, those that don’t speak.
Referencing the fact that getting out the walls of a terrible institution doesn’t mean everything’s wonderful or that you’re truly integrated into society.
But basically, Brandon Training School was a hellhole, like all such institutions. And pretending that being better than an absolute hellhole makes you wonderful… that’s dangerous. Low standards don’t help anyone.
Part of the medical neglect I experienced from this same agency involved having my staff hours cut in half for awhile and becoming dehydrated enough I almost passed out, setting off a long and ugly chain of events. I kept saying I needed more help the worse my health got as a result of this, and they kept pushing me further and further to perform beyond my limits. This made the health crisis much worse.
What I was told during this was that I was lucky to have staff at all because some people didn’t.
This is also setting the bar horribly low.
Setting the bar this low removes all responsibility from the agency for their failings. (They caused the staffing shortage by prolonged mismanagement.)
Setting the bar this low tells them that it’s not their fault, not their responsibility, not their obligation, if something goes wrong.
I should tell you a story of another agency.
Not the best agency I’ve been in, at all. But better than this one.
There was a week when my staff person was out sick and I was unable to get medication, food, and water.
I somehow made it to agency headquarters, turned on my communication device full volume, and said I wasn’t leaving until I got food and everything.
The head of the agency came into the room. He took me into a little room. He asked me what had been happening.
I told him, and he personally drove me home. He cleaned my apartment. He cooked for me. He got my meds. He got me water.
When people are allowed to act on their conscience, they will do things like this if they see someone in trouble.
I was in much more trouble during this health crisis than I was the day I went in to that other agency and demanded food.
But this agency has a system that absolves people of responsibility and allows them to feel they have no personal, ethical obligation to right a wrong when they see one. They may feel that it is an unfortunate failing of the system, but they will not usually step in and fix things when they see a catastrophe happening or about to happen.
Instead, they will demand we do more. Even if it breaks us. Even if it damn near kills us. Probably has killed some people I’ve never heard of. I assume every time I narrowly survive something, someone else didn’t.
“Some people have no staff at all” is not an answer. It doesn’t make it right that I don’t have enough staff. It’s a statement that the agency is failing its obligations and responsibilities. It is not something to try to make your clients feel lucky about if they get any support at all.
People have been fighting all my life for the right of people with developmental disabilities to live outside of institutions, to receive services in our own homes. It is due to the efforts of such people that I am able to get the support Ineed to live in my own place.My entire adult life, I have been in the developmental disability system.I receive an HCBS (Home and Community Based Services) developmental disability Medicaid waiver that allows me to receive services in my own home instead of an ICF/DD (intermediate Care Facility for the Developmentally Disabled).
In the current political climate, it can seem important to praise this system a lot.Politicians want to take it away from us.We are all aware we could lose our lives or our freedom.Plus, whenever we talk about the rampant abuse and neglect in this system, there’s always some parent group (like VOR) ready to run up and tell us this is why people like us belong “protected” in group homes, larger institutions, rural farm-based institutions, etc.
Understand that if you use my words this way, if you use them to promote traditional institutions of any kind, you are misusing my words, without my consent.In fact, the problems that exist in this system come down to the way the system resembles traditional institutions.Not that it needs to be more like them.It needs to be less like them.
But there are problems that crop up in this system that I have seen happening tome and to others over the years, and they’re only getting worse.And I feel like it’s time for me to talk as much about what I see going wrong in this system as I can.So I am going to have a series of posts about the developmental disability service system.
I am 37 years old now.I could have raised a child to adulthood in the time I have been in the DD system.As an adult I have pretty much always been in the DD system in California and later Vermont.As a child I was more in psychiatric settings, but sometimes also DD settings or mixed psychiatric/DD settings.It is common in childhood for many systems to be combined together — the foster system, the special ed system, the psychiatric system, the DD system, the troubled teen system, and so on.Kids from one system will generally be in others, and many places cater to kids from many systems at once.
To be clear, I want to talk about what developmental disability means.It’s a vague term.It’s not really scientific.It refers to a group of people who have been historically grouped together, often by accidents of history and assumptions.
So it’s usually said to include those who became disabled prior to 18 (or sometime 22) and have a certain list of traits in common.But only for certain disabled people.So usually the list given of medical labels are intellectual disability, autism, some forms of childhood epilepsy, cerebral palsy, childhood brain injury, fetal alcohol spectrum, and anything that looks or acts a lot like these things.
I have been labeled with several different developmental disabilities in my lifetime.In talking about myself, I prefer to follow the standards of most of the self-advocacy movement by people with developmental disabilities.That is, I speak of myself as a person with a developmental disability, a person with developmental disabilities, or a developmentally disabled person.I don’t put a lot of emphasis on what label I have or anyone else has.I put more emphasis on what is happening to us, what our shared experiences are, what common goals we have, and most of all our shared humanity which has been denied us by just about everyone.That is how most self-advocates approach these things.
In writing, I use DD as an abbreviation for developmental disability.I use ID as an abbreviation for intellectual disability. ID and DD don’t mean the same thing, even though some people us them the same: People with ID have a DD but lots of people with DD don’t have an ID. Everything else I generally spell out.I use HCBS as an abbreviation for the Home and Community-Based Waiver system that allows me to live in my own home and receive DD services.
When speaking of ‘staff’, I am not using the word in a way most people are familiar with. To a person with a developmental disability in this system, ‘staff’ usually refers to the people who directly take care of us. These are not people with less power than us. These are people with a lot, lot more power over our lives than we could ever have over theirs. This does not make them evil. I get along with my staff very well. But it does make them powerful, more powerful than they often realize. (Since in the office hierarchy of the agency, staff are at the bottom. They forget that we’re under them.)
I also refer to us as ‘clients’ sometimes. It’s just a word people use for people with developmental disabilities who get services through the system. It’s not my favorite word, but everyone in the system knows exactly what it means, so I use it. To be clear, despite it sounding fancy, it refers to the people with the least power of anyone in the DD system.
When I talk about the DD system, I am talking about the system that provides services to people with developmental disabilities.I will usually be talking about the adult DD system because that is where I have spent the most time, and where I continue to receive services today.
I have a lot to say about the failures of the DD system.Nobody has my permission to use my words to support that idea that we just need more group homes, larger institutions, ICF/DDs, a return to the old days.Nobody has my permission to use my words to support the new kind of institution that is cropping up:They call them ’intentional communities’ a lot of the time but that’s misleading, they’re institutions.They are often in rural farm settings and they are designed for lots of DD people to live there, sometimes specializing in one particular DD label.These are still institutions and they are still destructive.We do not need a return to the old days.We need something better than what we have.Just about everything that goes wrong in the DD system as it is today, goes wrong because of similarities to more traditional institutions, not because we need more traditional institutions.The solution is to become less institutional, not to return to the old days.Do not use my words to promote any kind of institution.Not even those fake intentional communities. If you’re from the VOR, forget it, you won’t find a shred of support from me.
The reason I am talking about these failures is because they affect me, they affect people I care about, and they affect a lot of people who will never have Internet access and who most of the world will never even know exist.Things are getting worse.It is hard to discuss these failures because I feel as if I must always be grateful I am able to live in my own home because of this system.But the failures make a lot of the freedom I enjoy into a sham, and it’s even worse for others.So it’s important to talk about what’s going wrong in this system, and that’e exactly what I intend to do.
So this post is just the first in what I hope to be a long series about the adult DD system, HCBS waiver programs, and other things that affect my life as an adult with developmental disabilities who needs services.I may seem to talk about minor things one day and major things another day.I write whatever I can, whenever I can.I hope to write a lot.There are a lot of things that happen that are invisible to a lot of people.And they happen to people who are mostly isolated and invisible to the world at large.
Anything that is happening to me is happening to the other 670 HCBS clients of my agency in one form or another, not to mention countless others outside this particular agency. The issues are system-wide, not agency-specific, although some agencies are better than others.
Click for full article by Cal Montgomery on stopping skin shock as torture at the Judge Rotenberg Center, an institution in Massachusetts. Spread this around.
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).