Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

We need to move further away from traditional institutionalization, not back towards it.

I’ve probably said this before.  But it’s so important I feel like it needs a standalone post.  

Mel holding up a set of house keys.
If only having my own house keys were enough to guarantee my services are not institutional.

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.

Anyway.

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.

So again.

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.

Advertisements
Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

Disability Integration Act graphics that agencies could stand to take a look at too…

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.

Picture: A brown tabby cat sitting on a chair. Yellow background, purple text. Words: Hi. I'm Abby. In my house, I can eat, drink, poop, play, and clean myself whenever I want. Humans want the same things. www.disabilityintegrationact.org
This is my personal favorite, and is the reason that my own home is not the same as moving into someone else’s home, no matter how much my agency wants to convince me that moving won’t harm me and forcing me to move isn’t massively unethical.

Picture of a small brown house rabbit on the floor with some vegetables and a toy. Olive green ackground, black text. Text says: Hi. I'm Lily. I spent the first year of my life in a cage. It made me lonely and angry. I'm much happier now that I live somewhere I'm allowed to be free. Humans feel the same. www.disabilityintegrationact.org
Not everyone knows rabbits don’t belong in cages, look up the House Rabbit Society if you want more information on that. Not everyone knows human beings don’t belong in institutions no matter what our disability is. Look up the Disability Integration Act for more information on that.

Picture of a brown tabby cat with white tuxedo markings. Purple background, blue text. Text: Hi. I'm Gallifrey. Listen... Cats don't belong in shelters, and humans don't belong in institutions. www.disabilityintegrationact.org
Pretty straightforward…

Picture of a brown and black puppy greeting a new smiling human by licking him on the nose. Grey background, pink text. Text: Hi. I'm Erastus. The day I got to my new home was a good day. Tens of thousands of people with disabilities are waiting for the services to start new lives in my state alone. You can help. www.disabilityintegrationact.org
This is horrifying but true. This is what I mean by forcing us not to live in our own homes is an ongoing, large-scale crime against humanity. I’m not making this up.

Dog lying on his back on the grass. Purple background, yellow text. Text: Hi. I'm Ersatus. I love my freedom. Disabled people love freedom too. www.disabilityintegrationact.org
It’s amazing how many people don’t grasp this, or seem to think that disabled people ought to be okay with giving up freedoms other people would strenuously object to giving up. They act like it’s the natural order of things. There are entire groups of people who think it’s their job to persuade us to be happy giving up our freedoms. Who think that there’s something wrong or pathological or that we’re in denial about our disability or something, if we still want freedom. That we’re just being stubborn or otherwise causing problems, instead of naturally wanting what everyone else in our cultures gets. It’s like freedom for us is optional and it’s our job to “accept” that. Bullshit.

Picture of an elderly black and brown dog who is very cute. Yellow background, blue text. Text: Hi: I'm Murdo. I have lived with my human for 11 years. As I age, I want to keep living where I feel loved & comfortable. Humans feel the ame way. www.disabilityintegrationact.org
This is a close second in terms of favorites.  People act like when people get older, they should be okay giving up their freedoms as well. This is just as much bullshit as it is when applied to disabled people. There is nothing about being old that means you have to leave your home. Nothing at all. No more than being disabled. This goes whether you acquire a disability or not as you age. Elderly people should not be forced out of their homes any more than disabled people should, nor forced to accept loss of freedom as the price of aging any more than it is the price of disability. The wholesale warehousing of elderly people is part of the same large-scale crime against humanity as the warehousing of disabled people, and is often done by the same industries.

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.

At any rate, all of this is very important, and I love these graphics.  And definitely tell people about the Disability Integration Act and give them the link to the Disability Integration Act website.  Which is http://www.disabilityintegrationact.org/

 

 

 

 

 

 

Posted in Developmental disability, Developmental disability service system, HCBS, Self-advocacy

What my home means to me: I have so much to lose.

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.

IMG_7948.JPG

 

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.

IMG_7944.JPG

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.

6EBBB5E2-4685-462E-9E83-887D40B221BC

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.”

IMG_7983.JPG

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.

IMG_8030.JPG

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.

IMG_7980.JPG

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.

IMG_8036.JPGIMG_8031.JPG

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.

IMG_7946.JPG

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.

IMG_8037.JPG

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.

IMG_7978.JPG

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.

Photo on 9-13-18 at 11.06 PM.jpg
You’ll pry my apartment keys out of my cold dead fingers.






I wrote this post using Unity on my Accent 800 communication device.  

This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.

unitything.png
The screen of my Accent 800 communication device.  Above the words, I’ve pasted in the sequence of picture symbols it takes to get each word, so you can have some idea how it works.  You hit a set of symbols in sequence and it gives you the word you are looking for.

 

Posted in Being human, family

“Bet your ass we’re paranoid!”

CXR0_y6W8AAFcyr
Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

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.

Posted in Being human, Self-advocacy

I was one of the scary kids too, and I won’t be able to watch this either.

Please read this post if you can:  A documentary about “scary” kids scares me on behalf of the kids.

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.

All of us were singled out as uniquely the problem, with a problem in our brains, a problem in our minds, a problem in our emotions, a problem in our souls, all of the above.  And once you’re singled out that way, anything goes.  Literally anything.  It’s why the Judge Rotenberg Center can still get away with using skin shock to torture children like the child I was for a time.

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.

What is being done to these children is obscene, invasive, its own form of violence.   I won’t be able to watch this thing either.  They are Xing these kids, and their souls are screaming.

Posted in Developmental disability service system, HCBS, Self-advocacy

The problem isn’t that we need institutions back. The problem is we haven’t got as far away from them as we think we have.

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?”

“Not really.”

“Do you remember being happy, being frightened, being sad?”

“I think the first thing I felt was lonely.”

“That must have been hard.”

“No.”

“No?”

“No.”

“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.”

“Try.”

“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.

A rock with a natural hole in it, held over a colorful crochet pattern.
Glamour, in folklore, is a spell cast to make something appear different than it is. Usually to make it appear better. Like making a bunch of rotting trash smell and taste like a tasty feast.  Folklore also says you can see the reality behind glamour by looking through a rock with a natural hole in it.  I have a lot of rocks with natural holes in them…

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.

 

Posted in Developmental disability service system

Agencies can set the bar really low.

Painting of a state institution for people with developmental disabilities, by a former inmate.
Painting of Brandon Training School by Larry Bissonnette, entitled “Larry Bissonnette as a Youth Living in DC Comic World of Brandon”.

Painting "Pell Mell Mainland of Rolling Fortress Monastery of Brandon Training School, Vermont" by Larry Bissonnette, a former inmate of the developmental disability institution.
“Pell Mell Mainland of Rolling Fortress Monastery of Brandon Training School, Vermont” by Larry Bissonnette, a former inmate.

Brandon Training School, a state DD institution as seen from the air.
Brandon Training School, Vermont’s state institution for people with developmental disabilities. Originally called the Vermont State School for Feeble-Minded Children. There are still people alive who grew up there.

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.

So setting the bar this low has consequences.

 

 

Posted in Developmental disability, Developmental disability service system, HCBS, Self-advocacy

Overview: My posts on the Developmental Disability Service System

If you can, please read this post when reading any of my posts on the developmental disability service system or the HCBS (Home and Community Based Services) waiver system.  (You can click either of those links for all posts in each category.  I might be inconsistent with categories but most posts on the topic will be in at least one of the two.)  It will give you some background for what I mean by certain words and what I intend to accomplish.

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 I  need 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 to  me 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.

I want to show what is happening to us.

Stop the Shocks: Torture in Massachusetts

Stop the Shocks: Torture in Massachusetts

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.

Excerpt below:

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).