I had an ISA meeting. That’s Individual Support Agreement. At the last second, they brought a Surprise Administrator. That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers. Surprise Administrator (SA for short) was someone who works in the Howard Center administration. Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m
The ISA is Vermont’s version of a person-centered plan. It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan. The meeting was certainly not very person-centered. It degenerated into a shouting match mostly. And a lot of it was the Surprise Administrator telling me that I was off-topic. At my own ISA meeting. When attempting to explain my ISA goals. Which were “off-topic” because they didn’t like
So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.
This moment of comic relief came at an unexpected time.
I had defined my first goal as survival.
I meant it.
I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.
So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:
Surprise Administrator: Survival isn’t a goal. Laura: Yeah it is! Surprise Administrator: It’s a vague goal. Laura: What’s vague about it? If her heart keeps beating… Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff. Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag) Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!
After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident. Especially given how sleep-deprived I was at the time.
So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.
It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.
The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.
It was started by a guy with a colostomy. The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc. It’s mostly about colostomies but can apply to anyone with similar things. My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals. Which could be months.
So this is the picture I posted to #GetYourBellyOut:
Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.
I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.
I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…
I watch a lot of standup. I watch good standup, bad standup, everything in between. I just watch standup whether I like it or not.
And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.
Because it’s less likely to seriously offend me.
Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy. So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.
Which includes me.
And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself. I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.
The issue is that most r-word jokes are hate.
They’re not meant in good fun.
They say “You’re not a human being.”
It doesn’t matter if you cloak that message in humor, it’s never okay.
The primary targets of the r-word are people with intellectual disabilities. But it has a broader range than that — it’s aimed in general at a group of people who are harder to define. Anyone who can be easily mistaken for someone with an intellectual disability, certainly. And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings. That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct. But we’re all lumped together under the r-word in the imaginations of the people who use it. It’s not a diagnosis, it’s a slur.
And I don’t use the word slur lightly.
To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.
It can’t just be an insult that’s often thrown at a particular group of people. It has to be more than that.
The r-word is probably the slur I have absolutely the least tolerance for.
People have been calling me the r-word since I was a child.
My voice sometimes has ‘that tone’ in it that people associate with the r-word. A sort of ‘dullness’. People imitating my voice have always taken advantage of that. And they imitate my posture and mannerisms as well.
By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.
But you don’t need to speak ASL to use our mannerisms and tone of voice against us.
And yes — people used the r-word on me even when I was technically classified as gifted. In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.” I’m not the only person I know with developmental disabilities who was told this growing up.
I was also told I looked like a [r-word] as a way to get me to behave more normally. It didn’t work. I never had any idea what they were talking about. (I also got called “blind” and “psychotic” in similar circumstances. There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)
At any rate, r-word jokes aren’t funny. At least, not the ones I’m talking about.
And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.
R-word jokes are an expression of hate, not an expression of humor. It’s not just the word, it’s the way it’s used. It’s the acceptance that those of us targeted are not human beings. It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes. And that most people don’t even register it as hate. Even though it’s some of the most horrible and dangerous hate I’ve ever seen.
Sacha Baron-Cohen says, “I am exposing. I am airing prejudice.” The only problem is that the people [who] are laughing, are not laughing at the prejudice. They’re applauding the prejudice! When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny. But even if it was funny, they’re applauding it.
Abraham Foxman, “The Last Laugh”
I agree with a lot of the people on “The Last Laugh”. It’s a documentary about where the line is between acceptable and unacceptable topics for humor. I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them. And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying.
And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense. Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest. And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.
Give me a good dick joke any day. Seriously. Sex can be funny. Hate isn’t. At least, expressing hate is not funny. Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.
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 tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red. Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact. There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now. I fully expect them to try at some point. Possibly soon. Possibly now.
To be really, really fucking clear.
There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.
The fact that some people there have nothing right now is obscene.
I am not causing them to have nothing by demanding what is both my right and their right.
Hell, I’m not demanding as much as I deserve. I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.
Right now, I’m just demanding what i need to survive and live in my own home.
Survival is a human right. Living in my own home is a human right. As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to. Every single one of us is entitled to the supports we need to survive and live in our own homes. The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.
If I ask for these rights for myself, I am asking for them for every single other client of the agency as well. I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that. And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us. I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well. In asking for what I need, I am merely doing the exact same thing.
So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.
I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.
When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.
I refuse to play their divide-and-conquer games.
I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.
If I don’t get what I need to survive, I’m not getting enough. If other people are getting nothing, they’re not getting enough.
I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.
So don’t ever get the idea in your head that all I care about is what I get. I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home. These are not excessive demands. These are bare minimum demands.
They are playing a lot of head games and a lot of word games.
But I can still see what’s happening.
And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor. Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.
Also, less than I need to survive safely is still less than I need to survive safely. The fact that I could get even less doesn’t change the fact that I need more than this. And that until recently, I was getting more than this without increasing my hours or changing anything. (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources. The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)
And no, I am not unique, that’s part of why all this frigging matters so much. If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.
Exactly what it says on the tin. This is a guide for people with developmental disabilities in United States, receiving services under an HCBS (Home and Community Based Services) Medicaid waiver program. Which includes me.
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.