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8:33pm August 3, 2015

Experiences at the Judge Rotenberg Center - Telling People’s Stories

andreashettle:

I would like to interview people who have been residents of JRC and people who have worked there.  It is incomprehensible to me that JRC still operates and my sense is that putting an end to the cruelty may hinge on people in positions of power hearing from people who have experienced life there. Until the Andre McCollins video became public, people were able to buy JRC’s story that the shock from the GED was like a pinch or a bee sting. Being able to witness the inhumanity of the shock has changed people’s understanding in important ways.

Offering people a way to tell their story in a safe way may make a difference. I am proposing an oral history/story project in which I help people tell their stories of life at JRC by interviewing people, writing their stories and giving people the opportunity to review/revise their story. It would then be up to each person to decide what he/she wants to do with the story. Some people may just want it as a personal record of their time there; others may want to share it more broadly. This could be done anonymously at the person’s discretion.  Each person will own and control his/her story.

Some people know all about JRC but when they hear about it in a person’s own words it can make it so much more real and only then does the horror of the situation hit them. One person’s story can make a difference.

If you are interested in sharing your story, knowing you will have complete control of it and if and how it is eventually shared, please email me at nancy-weiss@comcast.net.  If you know people who have been at JRC either as residents or staff, please forward this email to them. The best way for me to reach people will be people sending this request to others who may be interested.

Thanks for your help and interest,

Nancy Weiss

Signal boosting, because I would love to see this initiative succeed in gathering stories and maybe getting the Judge Rotenberg Center closed down. Nancy Weiss has been fighting against the atrocities at the Judge Rotenberg Center for MANY years, she’s awesome. 

Signal boost.

8:34am June 2, 2015

The Day I Spoke Up

jrcabuse:

     One of the last houses I lived in before I finally got out of that place was one I hated the most. The supervisor of that house had a really bad mean streak. I did my best to stay on her good side because if she didn’t like you she made sure your life was hell. Mostly I got along with her and bit my tongue when she tested me. But I was always stressed at that house, especially when she was in charge. I remember one day one of the other girls commented that we were being tortured. She got angry and said that we didn’t know what torture was, referring to her home country. But she was wrong, We knew torture very well. She had no empathy towards what we went through every day mentally and physically. She had the nerve to try and make us feel guilty for commenting on our own abuse. 

     It was a Saturday or Sunday. We were all sitting in the living room having some free time. One of the other residences called saying that a certain girl in our was on the list to go on a field trip with them. So the staff had to get her ready to go. She needed help dressing and stuff and she didn’t have any socks on. Staff didn’t feel like going upstairs to get the girls own clothes so they dug through the laundry that was downstairs with us. When they were giving her the socks I noticed they had another girls name on them. She was kind of my friend, and not even thinking I said, “hey —- aren’t those yours?” She said “yes”. Now I just want to say I didn’t do anything wrong. It was against the rules for staff to give our clothes or property to other students, although they did it all the time. And it was free time so I didn’t need permission to speak to my friend. But the supervisor got really mad that I said that. Her face turned nasty and my stomach dropped. She told me “No talking out!” I tried to hold it in, but the oppression, the fucking oppression, the power tripping staff who saw us as less-than. The policies and the “program” that stripped us of our basic rights to freedom of speech and freedom from cruel and unusual punishment. The program that denied my intelligence and personhood. I couldn’t take it another day. I came right back at her, saying “I was just helping my friend”. She says “no arguing with staff”, and it went back and forth from there. I knew I was going to lose all my privaleges by this point so I just kept talking. There was nothing I was doing on my program that she could shock me for. But she searched and searched my sheet. Finally she stopped and called the monitor from next door over. They had to call the monitor over to shock us ever since the prank phone call fiasco, so I knew what was coming. And I knew it was for a lie she made up. She lied and told the monitor I was tensing up, and they shocked me.

     I was so incredibly frustrated. I was at my breaking point. Staff did whatever they wanted and got away with it. And we weren’t even allowed to defend ourselves or speak up. At JRC, even if a staff is pinpointing you wrong, you are expected to accept it and the punishment, and then later write a “business letter” to your case manager telling them what happened. They teach us that we are punching bags and must accept all the shit done to us with out so much as a peep. That is teaching us to be victims that don’t matter.  I was sick to my stomach. I had to get away. I requested to call my legal guardian but was denied. I felt so unsafe there, with her. I knew she could make up any lie she wanted to hurt and shock me. 

     I gathered the strength, and ran up the steps and out the front door. As soon as I hit the cold winter air, my lungs tightened up from my asthma and I barley could make it across the icy front yard. I just crossed the street and I got grabbed from behind. It was the supervisor, and I felt like I was in a fight for my life. I couldn’t let her take me back inside, because now that we were outside, she could say I did anything and there was no camera to prove I didn’t. I knew she would. She tackled me into a snowbank and was sitting on me. I was trying so hard to get up. Cars were going by, and one finally stopped. A man got out, and told her to get off of me. I was yelling “help help”. She told him she had a right to do what was because I was in a “group home” and she was in charge. I kept asking him for help, and he got between us and made her get off of me. I remember I hugged that man, and I felt safer with that stranger then these staff I had been stuck with for years. He had called the police and when they came she kept arguing that she had a right to take me back to the house. But thankfully they wouldn’t let her. The police called an ambulance which took me to a nearby hospital. I felt so relieved to be away from her, like the world off of my shoulders, I had been so scared. They put me in an empty room at the hospital, and soon after, the supervisor arrived. She tried to come in the room with me and I freaked out. the security guard told the doctors that I was calm until she came near me, and they made her get out. After a while the weekend administrator came. She told me because of what I did I had to move to another residence with more staff. I actually felt relieved. I would be away from her. 

     I am so thankful to that stranger who stopped to help me. If he hadn’t pulled her off of me and called the police, she would have gotten me back in that house and shocked the hell out of me. It is amazing to me how all those strangers had more common sense and compassion then the staff and JRC program. It shows that what society considers wrong, is excused at JRC. Strangers saw me as more human the staff did. I was lucky that day, but there were many other days when I wasn’t.

Okay the following is not meant to take away from the impact of the story above at all, it’s just a reminder because of the symbolic super-importance the JRC has taken on in the minds of many people who have never been there or never been anywhere like it.  This should not detract at all from the horribleness of the JRC or the experiences of the people who have lived there or have been at risk of living there.  (I’m glad I didn’t have different parents, I would’ve easily been a candidate as a teen and young adult.)

So this is for everyone who wasn’t at the JRC:

Just a reminder that no matter where you are, these things are happening in  your backyard, right now.  You probably don’t even know how to recognize half the institutions in your area (many of them look almost like ordinary houses, these days), and your eyes may even glide over some of the more obvious ones as background scenery.  And things just as bad or worse are happening there, too.  The JRC sucks but there’s very little unique about it.  Focus on its uniqueness only contributes to the torture of others at other places.  Closing it may not even help some of its inmates:  Many will be sent to other institutions, and those institutions may do more damage than the JRC did for all anyone knows (and that can happen whether or not the person is consciously aware that the place is worse: it’s very common to be in a Stockholm Syndrome situation or one where you think a place is better because it lacks one specific thing that happened to you at another place, meanwhile it’s actually worse than the other place and you only realize it ten or twenty years after the fact when you look at the impact both actually had on your life – the worst place I was at had no locks on the doors, no bars on the windows, the windows were regular glass, no restraints, but it was utterly diabolical in ways that are far worse than things that other people would think are “objectively” worse… similarly many people I know who’ve been in both private and state institutions would take the state institutions any day, which causes surprise and disbelief among people who’ve only been to one or the other or neither – there’s no measuring stick you can easily use to say “this one is the worst” and I worry when JRC is singled out as the worst place anyone could possibly be… it’s an utterly horrible place, but unfortunately for disabled people everywhere, it’s one among many thousands, probably (I am not good at numbers but I think thousands at least)… so if you care about shutting down the JRC, please care about shutting down all the other places too, including the ones that are deceptively beautiful-looking but sometimes the most awful of all).

3:22am May 13, 2015

Rilla of Ingleside (mild spoilers, this is your only warning, also cw for stalking and institutions and war)

It’s actually my favorite book in the entire Anne of Green Gables series.  I read the whole series once while recuperating from an illness:  I tend to read “easy” stuff at times like that, because my brain won’t handle anything better.

Anyway, this was a very surprising book to me.  It’s different from any other book in the entire series.  It sucked me straight into what World War I was like for at least some of the Canadian women left behind.  And it remains the only book written by a Canadian woman who lived through World War I, about the experiences of Canadian women during World War I.

To give you a glimpse of the changed tone – you know that famous imagination of Anne’s?  She says that these days the only use it is, is to give her vivid images of all the different ways her sons could die in combat.  They talk about body lice (!).  And Rilla grows from an irresponsible and frivolous teen to a responsible adult within the course of the book.

But the reason I was thinking of it today, is because there was an interaction between characters that reminds me of interactions I’ve had with my (primary) stalker.

There’s another girl Rilla’s age (they’re in their mid to late teens) who is quite a bit of an asshole.  Rilla, like all of her family, has taken the idea very seriously that as women it’s part of their job to be strong, so that their family, friends, and significant others who are off fighting the war don’t have to take care of their feelings in addition to the horrors they’re living with.  So they have very intense feelings about the whole matter, but they aren’t about to show them in public.  You can debate whether this is a good idea or not, but I could see the logic behind it in a way I never had before.

(I have a lot of relatives who are veterans, but I’ve never had anyone close to me go off to war while I was alive. This book gave me a window into what that can be like, and what it was like in a war that was unlike one anyone had ever seen.  The book also showed me how important World War I was to 20th century history and beyond.  It changed everything.)

Anyway, so the girl who was being an asshole, was not only not hiding her feelings (which would’ve been okay, in and of itself, it seems to me that’s a personal choice that can go either way for any number of reasons) but was exaggerating her feelings to get sympathy from others, and then pointing at Rilla and saying “See, she has no feelings even though her boyfriend and brothers are all off fighting.  She’s a heartless, soulless monster.”

And that made me feel really vindicated at the time.

Because my stalker was saying similar things about me.  She was posting all over the web about how distraught I made her, how I was ruining her life, making her lose weight from sheer terror (because I was “stealing her life story” and therefore must have been stalking her since I was an age too young to understand what stalking was… all of this being purely made up on her part to make me look really bad), and on and on and on.  And how since I was still fat (although I did go through a period where I was too scared of her to eat, I hold onto calories better than her for reasons both hereditary and related to prior starvation), and since I wasn’t writing about her, and since I wasn’t writing about how upset I was, and etc., then I must just be a heartless soulless monstrous sociopath who has no regard for the feelings of others and no feelings of my own.

The truth was I wasn’t putting my feelings out there because I felt that would make me more vulnerable, which is the truth.  Any time I showed her what really hurt me, she’d do whatever it took to hurt me in that way, and she’d gleefully announce what she was doing, but in a way where nobody else could understand she was threatening me. 

Case in point:  I once confided in her that a reason I didn’t like being accused of “copying people” (something she accused me of constantly) was that when I was in mental institutions, special ed, and day programs, there was this sequence of events that always happened:  One person would get upset, and get taken into the seclusion room or whatever passed for one in the place we were at.  They would get treated badly, of course, but not as badly as… the next person to get upset.  The next person to get upset would get accused of “feeding off of” or “copying” the first person.  And they would also get punished by seclusion room, only their punishment was worse and longer for being second.  And if a third person got upset, given that there were only two seclusion rooms per ward (plus sometimes wards shared seclusion rooms with other wards, and sometimes there was a bedroom with a restraint bed they could use as a seclusion room in a pinch)… at any rate, if the seclusion rooms on a ward were full, and you did something that resulted in them putting you in seclusion, they had to carry you to one of the adult wards, and they would treat you even worse.  Again, for “feeding off of,” “copying”, etc.

So when my stalker wanted to threaten me with something, she said “I will make sure that you are always second.”  A statement that sounds innocuous, but actually means “I am going to trigger the fuck out of you on purpose, and yet claim to be the one who’s really triggered and that you’re just feeding off of/copying me.”  That kind of thing.

Anyway, the asshole girl in Rilla of Ingleside reminded me of my stalker in that one way.  She didn’t issue death threats the way my stalker did, but she did run around claiming emotions well beyond the ones she actually had (which my stalker definitely did, don’t ask how I know, it’s too long a story, but I can say that many of the things she did to make it seem like I was hurting her emotionally, were purely setups on her part, not actually spontaneous displays of emotion in response to something I’d really done), and she did run around claiming that Rilla’s attempts to keep her own emotions in check so that she could function and so that her boyfriend and brothers wouldn’t have her to worry about while they were off fighting… that this meant Rilla was inhuman basically.  And that’s all very vindicating to read when you’ve been subject to that kind of treatment.

And yes, that’s one of many reasons that I don’t engage directly with my stalker or show most of my emotions on the matter in public:  Because I know it will just end up hurting me or people I care about.  It’s not fair that life is like this, but life isn’t fair.  And I was surprised at the level of depth in this book compared to the others in the series.  Not that I didn’t like some of the others, but this one has got to be my favorite.

(If you read it, get the version that wasn’t Bowdlerized to remove anti-Germaan sentiment and things like that.  Yes, there are some offensive things said in the book.  But i think they were reflecting what the author had actually seen and heard people saying at the time, and while she could’ve handled it differently I’m sure, she didn’t.  And I’d far rather read the version she actually wrote, rather than the version that was rewriten for her to take out the parts that later generations found unpalatable.)

I’m not sure whether it’s one of the books that is free, or whether you have to pay some kind of small fee tto read it – it all depends on the copyright date, and I remember the series straddling the date when copyright becomes an issue in obtaining the books.  I downloaded it online and put it on my Kindle, along with the rest, and had an Anne of Green Gables marathon while I was recuperating from some illness or another (I still don’t remember which – given the timing, I’m wondering if it was the onset of my 2008 health crisis, when the myasthenia and the adrenal insufficiency both kicked in with a vengeance – a time when I was also hiding that fact from the online world, for fear of showing a vulnerability my stalkers could exploit… and they would have, had they known how sick I was).  And it’s still probably my favorite Anne book even though it’s really more a Rilla book (Anne is her mother).

1:47am May 10, 2015

Nonphenomenal Lineage

echoesfromnowhere:

Hello, good morning, sir
Your results are back
Now it’s time to pack
Your things and go

Seems you’ve came up rather short
Of the average sort
Now I must inform
You’ve no reason left to remain here

Now surely you understand
Only gifted hands
Will receive the chance
To touch down on fortune

Now we’ll gather up your things
Lead you to the gate
And you will go away
And never attempt to return here

Non-phenomenal lineage
Non-phenomenal lineage
Non-phenomenal lin–

This song has so many meanings to me.

Getting an IQ test at age 22, as part of an SSI evaluation.  Having been considered a gifted kid, and given the astonishment of the tester that my results showed  I was “much smarter than I looked”, I assumed that my test score was at least, you know, 125.  Years later, I received my SSI records in the mail in order to show them to an agency.  

My score: 85.  Right on the edge of “borderline intellectual functioning”.  In a different day and age, would’ve been considered “retarded” (that was the word back then).  By some autism-related definitions, places me at “low functioning” or “mid functioning”.  (The cutoff for low functioning, when based on IQ, can vary anywhere from 60 to 90 from what I’ve seen in the research.)

People trying to tell me that’s not really my IQ.  Then what is?  An IQ is a test score.  That was my test score.  There’s no test score hidden inside my brain, waiting to be let out. Test scores are how you score on a test, nothing more, nothing less.  And that’s all an IQ is.

Some people think my real IQ ought to be much higher, others think it ought to be much lower, and I find both equally insulting.   It’s like they have to make excuses in their heads for why my IQ is so low, or so high, depending on their perspectives.

I think of IQ testing every time I hear this song.

I think of being put into segregated educational settings.  I think of being segregated even within those settings.  The school in the barn at the treatment center.  I was too drugged to stay awake.  They were worried the other kids would think I was getting away with something, so they put me in a big chair, back to back with the other students so we couldn’t see each other.  Then in order to make it seem like they were teaching me something, they put a walkman on and earphones, and put a copy of the audiobook of “The Diary of Anne Frank” in my ears.  It didn’t keep me awake no matter how loud they put it, but it may have given me ear damage after awhile.

“You’ve no reason left to remain here.”  That line always got to me.  You don’t belong in the outside world anymore, you belong in special institutions built just for people like you, special schools, special programs, special this special that.

This song reminds me of everything about being exgifted.

I sang it to a poor, working-class nonautistic woman who came to Autreat and found herself surrounded by academic auties with advanced degrees in all these subjects, found herself feeling inferior.  She got blank looks or flat denial when she snarkily referred to herself as a low-functioning NT.

For every person who has ever disclosed a low IQ score and had other people try to explain away how “smart” people like them couldn’t really have a low IQ score.  For every person who has ever disclosed a high IQ score and had other people try to explain away how “retarded” people like them couldn’t really have a high IQ score.  For every person who has gained 80 points, lost 80 points, or otherwise changed IQ in drastic ways, and had people not believe them because of it.  It’s just an effing number on an effing piece of paper, folks.

For everyone who can’t pursue their dreams because they have the wrong scores, come from the wrong class, ethnic, sexual, gender, or racial background.

My own family has spectacularly nonphenomenal lineage, until a few people in recent generations we were always poor or working-class or both, many of us still are, and we could’ve been one of those eugenics family studies if anyone had got hold of us at the wrong time.  Lots of us have been called “slow” and “tetched” and “crazy”.  I’ve been told with my family history I should never have children because they might turn out like me or my other relatives.

And being told that someone like me should never set foot on a university campus again.  Having other autistics try the same university only to hear, “We tried someone like you once, it didn’t work out.”  The guilt.  I wished at the time I could go back to a group home or larger institution, where I “belonged”.

Must I go on about why this song brings tears to my eyes every time I hear it, or every time it goes through my mental jukebox?  And I absolutely use this one as musical echolalia all the time.  It fits my life too well.  Shut out of so many things.

1:24am January 27, 2015

Still mad about great-uncle Lindy

He spent decades taking care of his mom, IIRC.  Not that this should be why he deserves to not live in a nursing home.  But he worked really hard to uphold the values in our family that say we take care of each other, we don’t throw each other away.  Meanwhile the rat bastard branch of the family have found a way to put him away.  And those of us who care don’t have the means to keep him out.  Those who have the means to keep him out don’t care. GRRRRR.

11:15pm January 25, 2015

My Great-Uncle Lindy :-(

Yesterday, I wrote a poem:
It talked about how my great=uncle Lindy was one of the people who taught me the traditional family value that when at all possible, family does not allow family to end up in nursing homes.  Even if that means, as Lindy did, moving in with your mother and caring for her for decades.
Yesterday, unbeknownst to me, my aunt and uncle put Lindy in a home.  He had gone for a walk at night without his dog and gotten completely disoriented, and he’s now living in a facility for people with memory issues.
It looks to me like a situation I have often feared happening in my family, including happening to me (which is why I have done a lot to set up care for myself that doesn’t involve either family or institutions).
That situation is:
  • Those who retain these values don’t have the physical or financial ability to put them into practice.
  • Those who have the physical or financial ability to put them into practice don’t retain these values strongly enough to actually do so, if they retain those values at all.
Which means the aging, disabled family member ends up living in a home.  It makes me want to cry.  Lindy is a great man, he loves animals, he always took in stray cats and dogs and got them food and medical care. 
I wish I still had an electronic copy (or any copy, really) of a photo of me with him taken by my mom in my early twenties, where we had the same crewcut, and nearly the same outfit (shirt, suspenders, pants), and the family resemblance made it all look uncanny.  There was a cat on my lap wearing a cone because of her recent eye surgery.
I never talked much to him, but I never felt I needed to.  Just being around each other was enough for both of us.  I felt like Mary Margaret Britton Yearwood’s poem about wild kittens:  

I see big cats race across the yard as my grandma talks in cat talk.

Cat talk sounds like this: Here kitty, kitty.

In cat talk, here kitty kitty means I love you.

I don’t see any wild kittens but I know they are there.

My boy told me so and my boy doesn’t lie about important things like kittens.

I am tired of sitting on the steps, so I hide under the house and sit in the cool black dirt.

I am a wild kitten.

My grandma can’t see me, but she knows that I am here.

That’s how I felt visiting Great-Grandma and Great-Uncle Lindy. I’d run around the backyard interacting with their cats (many feral or semi-feral), but they knew I was there and their love was enough.
I wish even more that someone could move into his house and take care of him the way he took care of his mom.  But he has no children, and all the people inclined to do this have no ability to do it, and all the people with the ability lack the inclination and the values.
Arrrgh.
10:52pm January 24, 2015

Traditional Family Values

I believe in traditional family values

It is my obligation as a family member
To do everything in my power
To keep aging or disabled family members
From having to live or die in nursing homes

This was passed down to me
As a child
Through the example of my great-uncle Lindy
Who moved in with my great-grandma
To keep her out of a nursing home
As long as he could
Even as she broke her hips multiple times
And became frail and bedridden
She stayed at home as long as she could
Because of our family values

Because of our traditional family values
I was able to visit her every year
In her tiny little house
Smaller than some of my apartments
But filled with love and kindness
Because she was a hard-core Hufflepuff
And she and her house
Had a long time
To become part of each other

What, you were expecting something different?
Then either you’ve grown too used to hearing
Right-wing propaganda disguised as tradition
Or you don’t know how many valuable traditions
A family can have

I am very traditional in my own way
Even if you can’t see it
And it is traditions like this
That are at the core of my value system
Traditions that come from love
Not from unthinking obedience to hate

So next time you hear the words
Traditional family values
Think hard
About your family’s best traditions
The ones that come from love
You might not have any
But you might
And you might be surprised what they are

And if you can find any such traditions
Then do all you can to take back the meaning
Of traditional family values
To apply to the love your family has taught you
Passed down through the generations
That’s what tradition, in its best sense, means

8:47pm January 18, 2015

“We only took her home from the institution once. When it was time to take her back, she sat down, refused to get in the car, screamed, and cried her eyes out. It was so hard for us to forc her to go back that we never took her home again.”

— waaaaaaay too many parents of institutionalized developmentally disabled people… I hate hearing this story, from so many people, I hate it every time I hear it, because as usual, I don’t identify with the parents, I identify with the DD person.
12:08am January 9, 2015

Seven Deadly Words.

(Content warning for abuse, homicide, disability institutions, prisons, police, deadly ableism, deadly racism, suffocation, and violence.)

Seven Deadly Words:  “If you can talk, you can breathe.“
That’s what they said to me.  I weighed about 105 pounds at the time, somewhere between 5’1” and 5’2” in height.  And was very thin (for my bone structure), no padding to absorb what they were doing to me, nor the strength a bigger person.
They had me pinned to the ground.  I forget what my crime was, or even if I had a crime to begin with.  Merely fighting them when they randomly grabbed you from behind (as nearly anyone would fight in such circumstances!) was considered “danger to others” and allowed them to put you in an isolation room, tie you down, and possibly lengthen your stay.
The biggest men were often tasked with the job of keeping people on the floor.  So, remembering my height and weight again, I had men at least 6 feet tall and over 300 pounds holding me down.  Sometimes they used their hands and leaned their weight into my back.  Other times they just sat on me.
When I had trouble breathing, they just laughed at me.  Laura Tisoncik once briefly described that story in anonymous form:
As an IRC channel manager I get to see other things, too. I get to see the carnage wrought by years of "help”– not just in people my age, who were supposedly misdiagnosed and mistreated, but even in young teens. Ever want to clear out a room full of autistics? Start discussing restraints. But don’t do it unless you enjoy watching a lot of people have PTSD flashbacks. If you think this was all done for our own good, think again. I still have scars on my body, 30 years on, from having been beaten by hospital staff while restrained and drugged to the point where I was unable to sit up for three days. A friend of mine– a 19 year old, so this was not back in the Bad Old Days– tells stories of being restrained face-down, and the staff watching and laughing as she began to suffocate. And if you go peruse the Oasis web board online right now, you can read about a mother upset because her 16 year old aspie son was locked 4 days in a hospital “quiet room” for refusing medication. No, she wasn’t upset at the hospital, staff or doctors– she was upset at her son!
(from Why I Am Angry.)
But what she didn’t say was the fatal words that have meant so many deaths in both instittions for disabled people, and prisons.  I recently read yet another story of a cop killing someone for walking while black, and hist last words were “I can’t breathe.“
When I said “I can’t breathe,” the institution staff laughed at me.  But they also said the fatal words:  “If you can talk, you can breathe.”  I don’t know how I got out of there alive.  Luck, probably.
I’ve seen too many stories where people have died right after saying “I can’t breathe”, when being put into various kinds of restraint holds — choke holds, basket holds, and holds that have no fancy name but are still dangerous restraint holds.  Even putting someone in mechanical restraints increase the possibility of the person dying of severe stress, among other things that are more physical.
And always, always, when we say we can’t breathe, what do they say?
“If you can talk, you can breathe.”
And that is often the last words we’ll ever hear, just as “I can’t breathe” is often the last words we’ll ever say.
2:02am January 8, 2015

I don’t remember when “What do you want to be when you grow up?” turned from a promise to a threat.

But I do remember being a young teenager and constantly scouting out places I could live as a hermit, trying to brush up on outdoor survival skills, being sure I would need them at some point.  Because I was going to be a hermit when I grew up.  There was no question.  Otherwise I’d be institutionalized or shunned by society or something worse than both of those put together.

1:12am January 8, 2015

Shout out to all the developmentally disabled people, and people with dementia, and other cognitively disabled people…

…who go outside with a purpose in mind, only to be described as “wandering”.  Meaning that they had no purpose, their feet just carry them places.  Which definitely happens.

But if you’re living in a shitty nursing home, and you figure out how to leave it, then it’s pure imaginary bullshit on the parts of the staff, to believe that you had no reason to want to leave.

9:04pm December 1, 2014

The White Institution (written ~2002, events 1999)

I walked down the street
With my eyes on the building of white
I knew they were like me
Autistic and trained not to fight 

They rocked behind bars and
I knew I belonged there not here
Not out on the streets
With the ones who had never known fear

My body moved forward 
To ocean with sand and with stars
But my thoughts, they went back
To the white institution with bars 

As slugs we might be
But the world it had fashioned a shell
Not home anymore
Not here, not on earth, but in hell

madeofpatterns this is my best attempt to recreate from memory the poem I wrote about that white institution with the tiny yards full of wrought-iron bars, and the beautiful gardens that nobody ever actually walked in, that I saw anyway. I can’t find my last post referencing this place or I’d link it. If I ever find the original version (probably in my computer that’s in the shop) I’ll post it if it differs significantly from this version.

8:37pm October 29, 2014

I’m realizing lately how much family counts for.

Even with a family with a history like mine, we still all feel this duty (I’d say love, but I don’t want to speak for anyone else’s motivations, for me it’s love) to take care of each other. And I’ve noticed how rare that is in families lately. Just the ease with which people get thrown into nursing hoes… it scares me.

I know not everyone has a family like this. My family is weird because we have a lot of the bad things that can happen in families, some of them really bad things, and yet we still have this connection to each other, this rootedness, that seems very important to each of us in our own ways.

4:16am October 25, 2014

Memory from sixth grade

On the first day of sixth grade, we were all brought into a room by… I forget the guy’s title.  Our little private school was always trying to emulate far fancier private schools, the ones on the East Coast, and had aspirations of becoming a prep school.  (They did, eventually, add on a high school that was a prep school, but that was long after I left.  When I went there it was preschool through eighth grade and decidedly not a prep school.  I was one of a few middle or working class people who actually went there. Most people were upper middle class or rich (and honestly the two were so far above me I drew no distinctions.  My parents put themselves into debt sending me there.)  


So there were titles like Dean, Principal, Headmaster, Associate Head, and so forth, and I never could keep straight who they were or what their jobs were suposed to be.  Aside from showing off their expensive ‘environmentally friendly’ technology at every turn and encouraging people to see them as amazing eco-responsible people just because they could afford an electric car, for instance, back when nobody could.  So I know whic guy took us into the assembly and gave the spech, but I don’t know his name, his face, or his job description.

The very first thing he said is “It’s very important to remember you are not junior high students yet.”  I guess he thought we needed reminding because we’d gotten the nifty new uniforms that the sixth grade shared with the junior high.  No more ugly plaid jumpers, just dark blue skirts, polo shirts, and dark blue sweaters.  I really liked the new uniforms, as uniforms go, and was rather excited about the change.  In the same way that you get excited in an institution about gaining a level and getting more “privileges”.  Each year at this school, you would get new privileges, like the ability to eat lunch in certain areas, etc. And I was especially prone to getting excited about these things. 

One of the saddest things I ever read was by an autistic woman in a nursing home who had written to the MAAP newsletter.  (More Advanced Autistic People – it was written back when being thought high functioning was considered a rarity.  The autistic self-advocacy movement in the form of ANI has had very rocky relations with MAAP over MAAP’s insistence that ANI not bring any nonverbal “LFA” people to their conference.  ANI of course did not comply with this demand.)  Anyway, the woman was living in a nursing home that also took people with psychiatric or developmental problems. And she was thinking of leaving.  But then she said “But I’m not sure I should leave, because there’s some realy exciting stuff coming up on my level…”

And that broke my heart.  Because if she left, she could do those exciting things witout needing to “gain a level” to do them.  But she was too trapped in the institutional mindset to see it.  I almost cried when I read it.  I hope she is out of there by now.  And by choice, not by having died or been transferred to another institution.  Because she deserved freedom (with whatever support she needed to survive).  And she deserved to never have to think of herself as part of a level system.  I was part of a level system in most institutions I was at.  Some of them I utterly refused, seeing it as the mind and behavioral control tactic it was.  Other times I went along with it because you can easily get sucked in by promises of being able to go off the locked unit for 5-minute supervised walks and stuff.  Anyway.

All of which is why I always say schools are a good training ground for institutional life, and I mean it.  People think I’m trivializing institutions when I say stuff like that.  I think they’re trivializing the damage that schools do to children.  Just because, by this generation, practically everyone in the USA has been through formal mass schooling doesn’t make it a good thing.  Just because, for some people, school is the only refuge from an abusive home environment, doesn’t make it a good thing, it means we need better refuges.  But school is basically a place where people are thrown in with kids their own age, expected to learn good social skills (as in, not bullying) from people as immature as they are, and not taught to interact with people from a variety of ages and backgrounds.  In the USA, most learning is competitive rather than cooperative.

My mother found my brother this amazing classroom that shouldn’t have been amazing, but that I wish I’d had growing up.  In this class, each child was known to have strengths and weaknesses.  Each child helped teach their strength to all the other kids.  For instance, a kid really good at the alphabet would teach other kids the alphabet, paying closer attention to people for whom learnin the alphabet is harder.  In this way, every student learned, and every student taught, and the goal was to bring every student up to speed on what the other students were doing, rather than to compete to see who could out-learn each other.  If I had to go to school, I would choose a school like that class.  

Ideally though, I’d want the entire system overhauled.  I would want places where anyone of any age could come to learn any subject from anyone willing and able to teach that subject.  Sort of a cross between a school and a library.  You could have a 90-year-old learning to read alongside a 2-year-old and a 10-year-old if that’s what they all wanted to learn.  And in addition to learning (in groups, or one on one, whichever worked best) from the teachers alone, it would be like that school my brother went to – students learning from students.  (My father also had some of that going on by default – he started school in a one-room schoolhouse.  HIs one-room schoolhouse was much better than mine, though, because mine was special ed and it sucked.  He describes experiencing culture shock when he first had to go to a regular school, where you had hall monitors (“Hall monitors!” he still says with incredulity) and couldn’t go to the bathroom without a pass, and things like that.)

Anyway, back to the lecture the guy was giving us on how to be sixth graders.  Anyway, after informing us we were not, definitely not, junior high kids yet, he got very serious and started talking about maturity.  He said something like, “You’re going to find some of you are growing up faster than others.  Some of you are going to want to still play like you did at recess in your earlier grades.  And some of you are going to want to read, or talk about serious things.”  And literally every single person seated near me, when faced with the description of the kid who wasn’t maturing fast enough, turned around their heads and openly stared at me for quite some time.  Like you could hear them all turning around in their seats to look at me.  I felt horrible.  I knew it was true, that I wasn’t catching up with anyone socially, not even after repeating a grade, but there was no need to humiliate me about it.


2:11am October 25, 2014

dendriforming:

There actually seems to be a very specific “institutions trying not to look like institutions” aesthetic style. The JRC’s “non-institutional” furnishings look eerily similar to the furnishings in the new pediatric psychiatric inpatient ward they’re bragging about here. Same with the pediatric psych ward at Johns Hopkins.

How long will it take for the combination of aggressively cheerful colors and geometrically ~innovative~ but ergonomically dubious furniture to become a known thing?

I remember writing years ago about how the moment I saw the decor in the JRC I knew it was not just a bad place but a very, very bad place. Most parents unfortunately don’t know how to spot that stuff. Institutional veterans do. There was a time when I begged to go to a state institution rather than this one place, and I ended up having to go to that place anyway because there were no beds at the state institution, but everyone thought I was just crazy for begging to go there instead. But what I saw was a place trying too hard to look good. And I was right. By the end of my 6-9 months there, my entire family used the name of the place almost like a swear word. And my mom actually, when hearing the name of the family therapist (whose job it was to tell my mom that she had caused my “infantile psychosis that led to schizophrenia in adolescence”) said “may she rot in hell”, which is extremely out of character for my mom. My family still uses that place as a benchmark of the most stress you could possibly be under. Like “it’s not just bad, it’s [name of institution] bad.” And they had beautiful grounds, beautiful everything, with a heart from hell.