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.
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.
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.
In the developmental disability system, you can basically be sentenced and convicted of crimes, and they don’t even pretend due process is a thing. Some of the crimes are actual crimes, some are not. But they can write them in your permanent file on the strength of gossip alone. And then they can decide what to do to you for it. There is no trial. They don’t even pretend. Their word about you and about what to be done about you is law.
I once got pissed at a lady who was running a self-advocacy group. She was technically not running it, she was facilitating it. But many nondisabled facilitators run the self-advocacy group and tell people with developmental disabilities what we should be doing. They control us. And that’s what i saw her doing, and that’s what pissed me off.
If you want to know more about the way facilitators can control us in self-advocacy groups, read Dave Hingsburger’s article “Cutting the Strings: Suggestions for Self-Advocacy Groups”. It is available in this PDF link from the Green Mountain Self-Advocates 2010 Handbook. It starts on page 120.
Anyway, I saw her doing this. I got pissed. We got in an argument. My staff person was there with me the whole time.
I found out the next day that there were Things written in my file.
Thing #1: AWOL
Thing #2: Hitting the facilitator hard in the upper arm.
Thing #3: Trespassing
What actually happened was that I got pissed and walked out of the room. I came close to her but did not hit her or make a move to hit her. (There were witnessses, too.) Because of the way movement works for me, my legs carried me all the way across a street until I bumped into someone’s fence in that driveway.
I didn’t actually hit her.
AWOL, Absent WithOut Leave, is a weird term to apply to an adult. I was unaware I needed leave to walk out of a room for any reason whatsoever.
And in the state of California, walking up someone’s driveway and bumping into their fence is not trespassing.
My staff person, who was there the whole time, defended me to the Regional Center and said none of these things had happened.
My staff person was labeled ‘renegade staff’.
They can write anything about you. And what they write can change what kind of manipulation and behavior programs you’re subject to, as well as take you out of your own home and put you in a group home or other institution.
So if someone doesn’t like you challenging their power, they have the ability to throw that power around by accusing you of crimes. They don’t have to prove you did anything.
Office gossip about clients can also end up in our files, permanently. We are not always told what is in our files.
But bottom line, in the DD system, you can be charged, convicted, and sentenced for real or imaginary crimes. Without a trial. Without even being told.
Olmstead was the decision at the Supreme Court that has allowed so many Americans with developmental disabilities to live in our own homes of our choosing. Two women with developmental disabilities, Lois Curtis and Elaine Wilson, sued for their right to leave an institution.
It is the basis for the system that provides me services.
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.