2:18am August 4, 2015

madeofpatterns:

it is hard to express…

just how much you can break someone…

…if what you think you’re doing..

..is making them into someone who might someday become a real person worthy of respect…

I had a psychologist once who openly told me that his goal was to kill the person I was, and replace that person, inside me, with a person who was more functional and better adapted to living in the world and less psychotic.

Note that ‘psychotic’, for him, encompassed ‘autistic’.  (He was part of a team who had diagnosed me, among other things, as having been ‘psychotic since infancy’.  Which can only ever mean autism, because there’s no way to diagnose actual psychosis in an infant.  They were taking their ideas straight out of Frances Tustin’s books from the seventies, that differentiated some forms of autism from others, and called some of it autism and some of it childhood schizophrenia or childhood psychosis.  I was supposedly psychotic since infancy and schizophrenic since adolescence, although what the difference was, I was never exactly told.)

He did not succeed.

But he did succeed in doing some incredibly scary stuff to the inside of my head.  I was unable to defend myself against the things he did, because I was heavily drugged and he was an accomplished manipulator.

I have been told since – by strangers online who know nothing about my life, mind you –  that I should’ve known it was impossible for someone to kill who you are and make you into someone else.  That if I actually believed him that it was possible, then there was something clearly wrong with me that needed to be fixed, possibly by the very guy who was abusing me in this fashion.

Of all of the abuse I encountered in the psychiatric system, this man’s abuse was the longest-lasting and most damaging in terms of consequences for my mind.  I remember going into appointments with him and feeling like I was an entirely different person.  Like I’d walk in the door myself, immediately turn into someone else the moment I saw him, and leave the door someone else again.  Often I wouldn’t be able to remember our sessions later.

He once let it slip that he’d been trained by a certain school of hypnotherapy.  Then he refused to name it again when I and my family asked about it, and got evasive whenever we brought up the subject.  I eventually found some stuff by the person, and it was someone who was considered highly unethical by a lot of hypnotherapists, because he believed in lying to patients if he thought lying would bring them around to healing in some manner, and he also believed in involuntary trance induction.  When I read about the ‘confusion induction’, it was exactly what this therapist did sometimes. 

And being on a very high dose of antipsychotics made it impossible for me to psychologically defend myself.  Antipsychotics can have an effect where they basically shatter your cognitive abilities, including your defenses against having your mind invaded.  By which I don’t mean like sci-fi telepathy sort of mind invasion, but more like extremely skilled manipulation.  If you can’t think straight, you can’t defend yourself well against people who are hell-bent on manipulating you.

But he was incredibly up front about the idea that he was going to kill the person I was inside, and replace that person.  He said also that he was going to get inside my mind and never leave.  And that if I ever had an original thought, I should bring it to him, because I would probably die if I ever thought for myself for very long.

I remember when a friend first taught me to repeat “I am allowed to think for myself.”  She said I needed to repeat it to myself over and over until I really believed it, and that it was very important that I do so.  I thought she was trying to kill me.  And at first, even beginning to try to repeat it to myself, resulted in this torrent of confusing brain noise that felt like I was drowning.  It was like he’d set booby traps all over my mind.

People don’t think this kind of thing is possible.

People are wrong.

I was first able to begin resisting this stuff when I found a book about cults, by a person who had been a cult member and had indoctrinated other people, and he talked in depth about how indoctrination works and how to resist it and remove it from yourself.  I had never been in a religious cult, or even in any of the other types of cults in the book, but the residential facility I lived at when all this went down, had a power structure that resembled a cult enough that the book was very useful for me.

I actually confronted him about it once, after I started reading about cults.  He told me that anything he did was warranted because if it wasn’t for him I’d have been in a state institution for at minimum the rest of my childhood.  Mind you, when given a choice between the residential facility and the state institution, I chose the state institution.  I was overruled both because people didn’t believe anyone in their right mind could ever make the choice I made, and because there were no beds open in the state institution. 

But having now talked to people who’ve been in similar residential facilities and in the exact state institution I almost ended up in, I have been told that the state institution was definitely better.  Not good, not good by a long shot.  In fact, terrible.  But better.  State institutions don’t usually have the money to throw around for intensive one-on-one 24/7 brainwashing.  Which is why many actual patients prefer them to private institutions.  Not all patients, and not all institutions, but it’s a preference that occurs often enough, and goes against what most people consider common sense, that it’s been explicitly noted a lot in the psychiatric ex-patient movement.  Unfortunately, that preference (and, in general, preferences for places seen as “worse” from the outside for reasons that are largely aesthetic) is often seen as evidence that we lack sanity and should not have control over our lives. 

Of course, most of us would prefer no institutions, but when given a choice between different types of institutions, we’ll often choose ones considered “more restrictive” or “worse”.  Because our definition of what makes a place worse – as patients, who understand certain things instinctively that other people don’t understand – is often very different from what staff or family members consider worse.

So this idea that he was keeping me out of a state institution doesn’t hold water to me at all.

The idea that he did this for any reason other than his own amusement and power tripping, doesn’t hold water to me at all.  He was someone who got off on power and control.  Not someone who inadvertently misused power, but someone who craved power and misused it to do harm to people, and often enjoyed doing so.

He also told me that he really enjoyed being able to treat me, because normally people like me were stuck in state institutions and out of his reach, so he didn’t normally get to “work on” anyone like me.

Which was a creepy-ass thing to say.

I learned later that even in psychotherapy that is not deliberately sadistic, there’s a frequent idea that you have to destroy who someone is and replace them with someone more functional. 

So I was not imagining that he said this, and the fact that I believed him capable of doing something he kept threatening to do (when he controlled every aspect of my life, too, which can undermine anyone’s sense of reality), does not mean that I “had to have been crazy” and therefore that what he did was somehow okay.  (Why is it okay to do that to crazy people but not to sane people, anyway?  It shouldn’t be.  And why is it okay to imply that I’m crazy – and therefore apparently not worth listening to – because I was horribly abused by a psychologist on a power trip?)

TL;DR:  I had a psychologist once who told me that he wanted to kill the person I was and replace me with someone who could function better in the world and generally be a happier and better person or something along those lines.  He told me this, explicitly, many times.  His abuse did more damage to my mind than the rest of the psychiatric system combined.  And the one time I confronted him about the matter, he told me that it was all okay because he was doing it to keep me out of a state institution.  Except he was actually doing it because he got off on power and control.  Everything else was just an excuse.  It was horrible in ways I can’t even describe. 

133 notes

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).

13 notes

3:10am December 31, 2014

“Decrease, that’s Dr. R. alright…”

-a nurse at a mental institution I was in

Dr. R. knew what it was like to have to live most of your life on medication.  He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up.  So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration.  And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.”  He could not function without it, he needed constant assistance from others without it.  And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.

As a result, he preferred to give his patients as little medication as he could get away with.  As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.

The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations.  And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage.  So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.  

Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of  medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.”  Well, yeah.  Neuroleptics work to control behavior.  And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people.  Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible.  Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior.  They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.  

And they work to control our behavior by disrupting the links between thinking and acting.  A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’.  But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once.  But it won’t show on our face or body unless we get the side-effect of akathisia.  But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.  

Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics.  (“Tardive” basically means symptoms that appear slowly rather than all at once.  The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug.  There’s also acute versions of the same conditions, that do go away when you remove the drug.  Acute akathisia vs. tardive akathisia, for instance.)  The tardive syndromes I’m most aware of include:

• Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
• Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
• Tardive dystonia.  Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
• Tardrive dementia.  Cognitive impairment that does not go away after the drug has been discontinued.

When I say “does not go away”, I don’t just mean the first year of being off of these drugs.  I mean that it doesn’t go away pretty much ever.  It may improve to an extent going off the drugs, but then plateau and stay at the same level.  It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.

And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia?  Yeah.  Not that they knew that when they were busy loading me full of thee drugs.  Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet.  The first article that wasn’t a case study, came out about a year after I stopped neuroleptics.  But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine  and Haldol for behavior control in a (different from the above) mental institution.  The moment I took them apparently my motor skills took a nosedive they’ve never recovered from.  It was like they accelerated the progression of the autistic catatonia.

I know someone else with autistic catatonia.  They were on Mellaril throughout a lot of their childhood.  It was only after someone decided to take them off of it, that they learned to use speech for communication.  They were twelve years old at the time.  In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12.  I was first given neuroleptics at the age of fourteen.  Which made me lose skills much faster.  When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.

Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience.  Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me.  Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me.  One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.

Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing.  He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person.  But he tried.  He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed.  So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into.  It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen.  When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.

And he’s the one who helped me get off my psych drugs in the end – all of them.  It was harrowing, even tapering slowly.  But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs.  In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”.  Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way.  And when my friends told him what was going on, he just said “Discontinue it, immediately.”  Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on.  So he helped me get off of everything.  He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all.  He stuck with me the entire year it took for me to get back to what was now normal to me.  He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.

I never became the next Temple Grandin, which is what he wanted me to be.  But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike.  And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses.  I hope he got a chance to watch at least some of that unfold.  I lost touch with him after he retired.

Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.

I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made.  The majority, mind you.  But that’s more than I can say for any other psychiatrist I’ve ever had.  I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night.  He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system.  Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion  of neurologic and psychiatric problems.  And he decreased my meds when possible.

62 notes

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.

11 notes

2:35pm October 7, 2014

lantern-in-a-box:

epochryphal:

psa “here’s a #suicide hotline with zero context” is so unhelpful and upsetting

i need to know at a minimum if they’re
1. religious-based
2. lgbT-competent
3. risk-reduction or total abstinence
4. going to inform any authorities, call ambulances, that shit

jfc shoving a string of numbers at ppl with “this’ll fix it!!!” is so insulting and unrealistic, you have no idea how many folks have been failed by this shit already

moreover: tag your fucking suicide hotlines

Seriously.
I went to a crisis chatline from one of those posts about online crisis lines, and they literally told me I was possessed.

I don’t post those posts about online crisis lines, even though they always have that air about them like “You’re an asshole if you don’t post this, look at all the lives you could save.”

My experiences with crisis hotlines have been decidedly mixed and I ended up involuntarily committed through one at least once, while all the way they were telling me I’d be admitted voluntarily and they were so proud of me for doing the right thing and getting help… then I got trapped in a hellhole of a psych ward.  Like… my staff person had been in a state mental institution in the seventies, and she walked into the dayroom to visit me, and turned white, and said “these places haven’t changed one bit”.   And this happened in like.. 2003.

Anyway, I don’t trust them, I’ve gotten horrible advice from them, I’ve gotten advice that would have led me to kill myself in another situation.  And they will often have you committed.  If they ask for your phone number, don’t give it to them unless you want them to be able to commit you.

16,781 notes

4:14am September 21, 2014

fullyarticulatedgoldskeleton:

boys-and-suicide:

raksolnikov:

parenting tip: talk to your kids about mental illness. tell them they might have a hard time. tell them they can ask for therapy and medication. tell them they aren’t alone. tell them if your family has a history of mental illnesses and which ones. just fucking talk to your kids and be there for them.

This would push through so many barriers

Tell your kids about disability, too. My dad KNOWS about mental illness. He went online and “educated” himself with shit from like Nami.org, before I was officially diagnosed. He has not ever accepted that I’m disabled and his denial has endangered my life.

Also teach your kids about choice.

Teach your kids that the psychiatric system and programs coming from it can be dangerous, especially if you’re severely mentally ill and not getting better from the treatments.

(i.e. you’re not what I used to call the “three-day depressives”, who never saw how bad the institution was because they’d come in for three days, get put on medication, feel fine, leave, and never come back, and would talk about how wonderful the place was while I was tied down in the next room being tortured for staff amusement)

I was severely psychiatrically disabled (although I still maintain there was no diagnosis that fit what was going on, so I just got a lot of random diagnoses ranging from psychosis to adjustment disorder… but I was definitely not one of the more valued types of mentally ill people) and I got treated like crap by a system that couldn’t fix me.  They blamed me.  It was awful.

And they need to know that the system is not their last hope.

I know someone who almost decided to do a school shooting, in the seventies.  Why?  She’d been horribly depressed, suicidal even.  They put her in a psych ward where she was tortured to the point she still has the physical scars on her body.  (Which is not about bad apples, it’s about an environment that creates abusive people even if they weren’t to begin with.)  And to her, the psych ward had been presented as her last resort, the last hope that she had of leading a happier life.  When that didn’t work, she was willing to commit suicide and take out as many people that she blamed for her problems (bullies, teachers, etc.) as she could.  Luckily she was stopped by her conscience in time, but not until after she’d acquired a gun and made plans.

And that is just one of the most extreme examples of what I’ve heard happening when the psych system is presented as your only hope.  In my case, I had no homocidal tendencies, but I did try to kill myself many times because the psych system didn’t remove my urge to kill myself no matter how much therapy I got, how many meds I got, it just got worse.

Kids need to be taught there are other choices.  They don’t have to take meds.  They don’t have to see a shrink.  They don’t have to go inpatient.  There are risks to doing all of those things, and kids need to be taught that, too.  They don’t need to be taught the shiny utopian view of the psych system with magical powers to make us all better.

And I hate NAMI with a passion, and have ever since I first heard of it.  It was my first experience with an organization about a group of people, run only by family members and professionals of that group of people, and treating actual psychiatrically disabled people like shit when they weren’t tokenizing them in some way.  I know some psychiatrically disabled people who work within NAMI trying to change it, and I wish them luck, but I don’t hold out a lot of hope.  I really hate NAMI.  NAMI is not a good source of information about anything at all.

And they think calling them “brain disorders” or “neurobiological disorders” or “NBDs” for short, will actually fix anything.  Ha!  I remember NAMI touting a book called  "Don’t Call Me Crazy".  One of my favorite books is “Call Me Crazy” by Irit Shimrat, who is (by the labels of the psych system) schizophrenic and has been very active in the mad pride and ex-patient movement.  And she’s one of the people who uses crazy, mad, lunatic, and insane as descriptions of her experience because she feels they capture them better than a clinical label.  Her book was amazing to me when I read it.

199,969 notes

5:36pm September 8, 2014

LGBTQ/crazy problems #29183

While coming out, go to an LGBTQ community center.

Mention time spent in mental institutions.

Hear utter horror in a woman’s voice as she asks, “For being a lesbian?”  The entire room tenses up and freaks out.

Say “No,” and explain the actual circumstances of your commitment to mental institutions.

The entire room lets out a collective sigh of relief and someone actually says “Oh, that’s okay then.”

Leave, while restraining urge to kick everyone’s teeth out.

31 notes

9:48am August 20, 2014

lichgem:

‘Chill, it’s just the fur’

I have never wanted to punch anyone so much in my life

Considering cats are covered in fur, is there some sort of zone where they would finally find it unacceptable to set a cat on fire? What the fuck were they thinking? That cat had to get emergency treatment. ‘Just the fur,’ fucking asshole.

This story is disturbing on multiple levels, so be warned.

I was living in a residential facility for teens in the psych system.  At first, it was only for teens who had labels of severe enough mental illness that otherwise we were going to be in a state institution.  But they stopped being able to get enough of such people, so they decided to start taking parents’ obnoxious kids off their hands, for a fee.  Which usually meant bullies who didn’t give a shit about anyone but themselves.  Which is a horrible bunch of people to mix in with people with, say, severe schizophrenia or bipolar or autism.  Which were the sort of labels most of us had coming in.  (They tended to change our labels as we came in, so I had an autism diagnosis but it was changed to “infantile psychosis with childhood paranoid schizophrenia starting in adolescence, caused by bad mothering”.  Because they were psychoanalytic douchebags who were throwbacks to the seventies.  But anyway.)

So one day I opened my door and it was surrounded by the newer, bully kids.  And I smelled what smelled like burning hair.  And they said “We set the cat on fire.”  And the staff were trying to tell me this was impossible, but one of my biggest triggers ever is cat abuse so I was already flipping out and they knew it.  They had burnt their own hair with a lighter to make the smell.  And they were talking all about how badly the cat had died, and going into gruesome details, and stuff.

And they were going after my roommate, too.  I forget what they were telling her.  She had a delusional disorder and believed her family was part of the Irish mafia, and they were using that against her somehow.

At the time, I still identified myself as non-human, specifically I called myself an elf.  And right when they’d gotten me as freaked out as they could possibly get me, they started saying “When a cat dies, an elf dies next!”

At which point the only decent staff in the entire place, took one look at what was going on, scooped up me and my roommate, and drove us to the other house for the night.  (There were two houses, down the road from each other.)  He did his best to convince us that they were just fucking with our heads and that no animals had been harmed, but I couldn’t believe him until I saw the cat the next day.  And my roommate didn’t look too sure of herself either, she kept muttering about how she’d have her family kill the families of these other kids.

At any rate, this is a problem I saw over and over and over in my time in the system:  Places would have kids who were very vulnerable to being abused, and to make more money, they’d also take in kids who were being kicked out of their parents’ homes or their regular schools for victimizing other kids.  And they’d put us in the same schools, or the same institutions, together, and it would be the perfect environment to make sure the actually disabled kids were victimized by the kids whose only disability labels were basically fancy words for “habitual bully” and “asshole”.

But that was one of the worst nights of my life, thinking that they’d killed a cat in such a horrible way and were coming after me next.

10 notes

9:33pm August 12, 2014

lichgem:

youneedacat:

lichgem:

I wish there was some kind of list of “best places to live if you’re disabled” with examples of how the places in question can help and accommodate disabled people, and how likely they are to actually follow their own laws with regards to disability rights.

I tried to do a search a while back but everything turned up “places with the most services.” Services doesn’t mean shit. Where I live now has plenty of services and they are brutally ableist and that’s why I’m leaving.

(Also, it was always by parents of disabled people looking for services.)

Yeah and services really depends on what kind of services.

Mental health services are shit pretty much everywhere.

Physical disability and developmental disability services are shit in some places and amazing in others, and in others can vary from amazing to shit in the same place depending on all kinds of factors.

Sometimes “services” means institutions, and sometimes it means community institutionalization, and sometimes it means actual community-based services aimed at helping people function wherever they want to live.

I don’t understand why it seems that the last kind don’t exist for mentally ill people ANYWHERE that I’ve ever heard of.

That’s a huge problem for me. I wish I didn’t occupy this invisible niche. I don’t think I could ever be considered developmentally disabled or physically disabled but I need the same things other disabled people do. Mental illness seems to be in this weird zone on its own, in people’s minds. I can’t articulate things right now, I’m hungry and that’s making me tired and bad at thinking.

The thing is – lots of mentally ill people need exactly what you need, what most disabled people need:  Help doing the things their illness makes it impossible for them to do.

Depressed people who can’t make it out of bed, let alone do stuff around the house.

Schizophrenic people dealing with severe negative symptoms that keep them from being able to take care of themselves, at all, no matter how much they want to.

Manic people who can’t stay focused enough on one thing to get anything done around the house, including things like making sure they eat.

ADHD people whose executive function won’t let them function at all.

And so many, many more examples are out there.

And basically, what people need, is help to do what they can’t do.  The same way that someone with a chronic physical illness, or physical disability, or developmental disability, needs.

And I honestly think mental illness and cognitive disability in general, including cognitive developmental disabilities, contain a huge degree of overlap to the point that the only reason they’re not classified together is an accident of history and diagnostics.

And at any rate, if mental health services wanted to do anyone any good at all, they’d be like the Medicaid waiver services offered to physically disabled/chronically ill, or developmentally disabled people.  Or rather like the best of those services:  You get someone to come into your house and do for you what you can’t do yourself.

And I don’t know anywhere that exists.

And it enrages me because I know so many people trapped in no-man’s-land because they have only psychiatric disabilities and can’t fall back on any other disability.

And even people who technically could, I’ve seen passed back and forth between DD and psych so fast they get whiplash.  Because neither one wants someone they see as belonging to the other.  (Which has been good for me, because no psych institution wants to keep me once they learn I’m DD.  "We don’t have the facilities for people like you.“  Great, great, get me the fuck out of here, I’ll put up with whatever condescending speech you want to give me as long as you let me leave.)

My friend, in the disability gulag, without support is a post I made ages ago about a guy who literally had three developmental disability diagnoses – epilepsy, autism, and intellectual disability – yet couldn’t get DD services in California because they wanted to force him to stick to the psych system, and his mother was interfering too, it was a mess, and I only hope he got even half of what he wanted in life.  He’s stuck in a board and care home in California, last I heard.  I remember he was being sexually abused by his roommate, and nobody did anything about it, although that’s not his roommate anymore, so at least there’s that.  And when you have to say "At least there’s that”, about that, just fuck.

And he wasn’t sure he was institutionalized.  I could look at him and see institution all over him, and he wasn’t sure that a board and care home was an institution enough to count.  He was the only person at Autreat that year that I could connect to on any level.  The support group that had failed me when I was at my worst, was really trying to help him, but having trouble.  (I wonder if it had anything to do with me being AFAB, I hate to say.)  Because his mom wouldn’t let him go, she’d say “they’re too high functioning for you”.  She’d let him visit me, because she saw me as low functioning enough, I guess?  She’d seen me on TV and suddenly idolized me and would call me so much asking for solutions I didn’t have, that I sometimes had to hang up, because she wouldn’t hang up.  (If I said I had a headache, her response was to get out an herbal remedy book and try to cure it on the spot so that I could keep talking to her.  It was utterly exhausting.  And I loved this guy, but his mom was near impossible.)

What I hated was when I was going to move away, and he kept saying that his trips out to see me were the only freedom he was ever going to see in his life.  He kept saying how even these tiny little things about being out with me and our mutual friend, made him feel the ache of freedom, and he’d go back and fight with his mom because he felt like she was keeping him confined, and that didn’t help him in the end.  He had no power.  None.  And it’s dangerous to give tiny amounts of hope to people with no power.  I still feel horrible and impotent when I think of him.

He was in California.

So were lots of people I knew in mental health housing of the worst sort.

He wasn’t even allowed food in his own apartment.

I just…

I can’t.

He could have been me, he so easily could have been me.  If I hadn’t encountered the right people in the autistic community, if they hadn’t insisted on making sure that my primary diagnosis was autism and not schizophrenia or schizoaffective anymore.

And not everyone has that “out”, as you’ve pointed out.

But it still could’ve been me, even so.

And if it isn’t me, it’s someone I know.

Most of the teens I was in the system with were destined for this, or for DD group homes, which can be just as bad.

It’s so damn hard to stay free and get what you need.

I almost think what you need is some ability to hire your own staff, but I don’t know how you can do that on your income.  Because if you could hire your own staff, you could determine what tasks they helped you with.

ARRRRRRGH.

(No, I’m not trying to solve everything at once here, I’m just frustrated because I’ve seen this so many times before.)

29 notes

2:20pm August 2, 2014

"As a last resort"

realsocialskills:

Content warning: This is a graphic post about brutality towards people with disabilities. ABA and justifications for abuse are discussed. Proceed with caution.

People do a lot of brutal things to people with disabilities, including children.

Some examples: pinning them to the floor, punishing them with electric shocks, medicating them into immobility, putting them in 10-40 hours a week of repetitive behavioral therapy, taking away everything they care about and making them earn it by complying with therapy, taking away their food, and confining them in small places.

These things are now somewhat politically unpopular. We identify, as a culture, as having got past that point. We think of this kind of brutality as something that happened in the past, even though it is still common.

What this means in practice is that whenever people do brutal things to someone with a disability, it will be called the last resort. People doing the brutal things will claim that they minimize them, that there are protections in place, and that they only do them when necessary.

For example, this is an excerpt from the (as of this post) current ethical standards for BCBAs (certified ABA experts):

“4.05 Reinforcement/Punishment.

The behavior analyst recommends reinforcement rather than punishment whenever possible. If punishment procedures are necessary, the behavior analyst always includes reinforcement procedures for alternative behavior in the program.

4.06 Avoiding Harmful Reinforcers. RBT

The behavior analyst minimizes the use of items as potential reinforcers that maybe harmful to the long-term health of the client or participant (e.g., cigarettes, sugar or fat-laden food), or that may require undesirably marked deprivation procedures as motivating operations.”

In other words, the current standards of ethics for ABA practices explicitly allow punishment, harmful reinforcers, and “undesirably marked deprivation procedures”. But, they claim to “minimize” it, and only do it when they consider it necessary in some way.

This is an empty claim. Everyone who has ever used harmful reinforcers and brutal punishments has claimed that they are only used when they are necessary. Even the people who deprived children of food and made them live and study on electrified floors (graphic link, proceed with caution.) Even the electric shocks and food deprivation used by the Judge Rotenburg Center do not violate the BCBA ethical guidelines, because they claim that they are necessary and only used in extreme cases (even though they shock people for things like standing up from chairs without permission.) 

Whenever any of this is done to someone, it will be justified as “a last resort”. Even if it’s an explicit part of their plan. Even if it’s done regularly with no attempt to transition to another approach. Even if nothing else has ever been tried. Someone who is treated brutally will be assumed to have deserved it.

People call things last resorts to justify doing them. They choose to do brutal things to a vulnerable person, but they think of it as inevitable because it is “the last resort”. Calling something “the last resort” means “it’s that person’s fault I’m doing this; I could not possibly do otherwise.”

    

Treating someone in your care brutally and then blaming them for your choices is inexcusable. 

    

To those treated brutally and told it was a last resort: I’m sorry that happened to you. I’m even more sorry if it’s still happening. It’s not your fault. It’s not because of anything you did, and it’s not because there’s anything wrong with your mind. You were abused because others chose to abuse you.

Everything that was ever done to me at a particular residential facility that was abusive beyond belief – from giving me twice the toxic dose of Clozaril, to giving me a diagnosis they knew was inaccurate in order to get me onto said Clozaril, to beating me up in order to get me to make eye contact, to making me walk back and forth from the barn to the house until I walked "normally” enough to deserve to eat, to telling me that he was going to get into my head and never leave and kill the person I was and replace me with himself as well as someone more functional than the real me, to what we strongly suspect was involuntary trance induction…

…I wrote to the psychologist about it and he told me that given “the alternative” was life in an institution, he felt justified with everything they’d done to me.  He also said some weird stuff about “I don’t usually get to work with people like you at all because you’re normally on back wards of state institutions, and they won’t let you near me” like I was some kind of collector’s item.  And he basically told me that if it weren’t for him I’d be in an institution forever, and that he’d saved me and that I should be grateful.

6-9 months of my life at that place, mind you.  The rest of my life trying to recover from the damage.  Talk about CPTSD.

231 notes

1:44pm August 2, 2014

silversarcasm:

how can you not see ableism as a feminist issue

autistic girls, especially black autistic girls, are misdiagnosed and underdiagnosed because of the focus on white cis boys and how they present as autistic

disabled girls and women often have their consent violated, both in medical procedures and otherwise, our bodies and minds are often not considered are own and we are dismissed as not having the capacity to make our own decisions

on top of that many disabled girls are seen as delusional and their speaking out about the abuse they have face, by whatever communication method, is often seen as them making things up and over reacting

many disabled women are fetishised and seen as an outrageous ‘thing’ to fuck, but are not seen as human

disabled girls, especially physically disabled girls, do not live up to ideas of beauty in our society and often have extreme self esteem issues

disabled women and girls face more shit than you could ever know and I need you to understand

Ableism. Is. A. Feminist. Issue.

Not only that, but everything about how women are weaker than men both physically and emotionally and therefore shouldn’t be able to do the things that men are allowed to do?  That’s ableism too.  So are most of the ways that feminists try to disprove it.  (They try to shift the ableism onto someone else, instead of dismantling the ableism altogether.)

Every form of oppression has a thread of ableism running through it.  Not just because there are disabled members of every oppressed group, but because one aspect of oppression has always been declaring an oppressed group inferior on the basis of ability, which is ableism no matter how you see it.  The idea that black people are intellectually inferior is ableism, drapetomania was ableism, these things are ableism in the service of racism.  

There is ableism in the service of every ism, and it always takes similar forms:  

1.  Declare a group of people categorically inferior on basis of ability, and then treat them the same way you would treat disabled people.  

2.  Additionally, if possible, find a way to medicalize normal traits of the group in question.  

(So, for black people who wanted to escape slavery, the medicalized category of drapetomania was created.  For women who were insufficiently feminine, they could be locked up in mental institutions for “maladjustment to the feminine role”.  Some groups of people, such as gay people, had their entire existence medicalized as a mental illness.  Trans people still do, and there’s a lot of argument in the trans community as to whether this is good or bad, considering it helps us get the hormones and surgery many of us need.)

So whenever you look towards ending an ism, always look for the ableism inside of it, I guarantee you it is there in one or the other of those two forms if not both entangled with each other.  And without getting rid of the ableism, you’ll never get rid of the rest of the ism.

And before anyone asks?  No, this does not mean that ableism is more important than other isms, or that ableism causes all other isms.  It just means that it’s inextricably intertwined with other isms at a deep level.  Don’t read anything into this that I’m not actually saying, and everything will go much more smoothly.

61,794 notes

1:00pm August 2, 2014

“

You wonder how a system so sophisticated, so technologically advanced, can treat people with such cruelty. Of course, it is not the system at all. It is one doctor, two nurses, an aide, or an orderly. It is people who lock people into seclusion rooms, and it is people who affix the leather cuffs or the chains or the gauze strips. It is people who do this and who do not have the courage to confront the unimaginable. It is people who believe they must do what they must do and that what they must do is the expedient thing. It is people who justify torture. “We’re only trying to help. We don’t know what else to do,” they say, with their refrigerated voices.

Does it really matter what else you do? Or is it enough to acknowledge evil, which is indifference to suffering and indifference to the sacredness of the human person? The only way to fight evil is to unmask it, to speak up, to refuse to participate in it, to not be indifferent.

But to us, the hostages of evil, the feeling of endless time is crushing. For us, even when the door is opened, the restraints loosened, we remain captives. We can never forget.

”

31 notes

6:51pm July 23, 2014

➸ San Francisco passes law allowing forced treatment of mentally disabled

nicocoer:

ukiahsheart:

sinidentidades:

San Francisco lawmakers approved a law allowing the forced treatment of mentally disabled patients under certain conditions, drawing swift criticism from patient advocacy groups who say the measure tramples civil rights.

The San Francisco Board of Supervisors, which passes legislation for the California city and county, adopted by a vote of 9-2 a measure known as Laura’s Law.

If given final approval it would allow court-ordered outpatient treatment for people with chronic and severe mental disability deemed a risk to themselves or others or who have been jailed or hospitalized more than once in the prior three years, among other conditions.

San Francisco legislator Mark Farrell, who proposed the legislation to the board, said the program would help vulnerable people “and provide the families the support they deserve”.

Modeled after a similar involuntary treatment law passed in New York in 1999, California lawmakers passed Laura’s Law in 2002 after 19-year-old Laura Wilcox was shot and killed by a mentally disabled patient at a Nevada County behavioral health clinic where she was an intern.

The state law allows family members, police officers or mental health professionals to file petitions requesting the court-mandated treatment of a mentally ill person.

Individual counties can opt out. Laura’s Law has only been fully adopted by three California counties: Nevada, Orange, and Yolo. It is expected to receive final approval from supervisors this week and then be signed into law by San Francisco Mayor Edwin Lee, who has expressed support for the program.

The law’s implementation has been slow and sparse due to the concerns about civil rights, resources and costs.

“This is the wrong direction for any community but especially a progressive community like San Francisco,” said Mental Health Association of San Francisco Executive Director Eduardo Vega.

“There’s no real doubt that this is a process that fosters stigma around mental illness,” Vega told Reuters after the vote.

The law requires city health officials to offer a mental health patient voluntary treatment before being forced into an involuntary outpatient program.

It also appoints a three-person panel to each case, which includes a forensic psychiatrist who would review the case to determine if a court-mandate is necessary.

I’m not sure how I feel about this. I can see both sides of the argument. One the one, questioning and taking away the facility of a mental ill person to make decisions for themselves is stripping that person away of his/her rights. 

On the other, If someone with a mental illness refuses to get the help they need and is a danger to him/herself or others then there should be some sort of procedures put in place to make sure they get the help they need. 

I remember being about sixteen and watching as my Aunt’s family decided to try and intervene on the behalf of my cousin. He accepted their intervention begrudgingly and sought out treatment for his mental illness. He hated my Aunt the whole time. Wouldn’t speak to her. But he got treatment.

I’m not sure they had much recourse had he not gone through with it and this law might have been their only recourse. 

But don’t think I’m not aware of how this law might be abused. I see so many cases of neglect/abuse through my dashboard because of neuroatypicality/mental illness/disability and this law could just be another form of abuse if we’re not careful. I’m gonna be watchful. 

No this law is NOT needed, as there are ALREADY (over abused FYI) procedures in place to put someone who is deemed “A Danger to themselves or others” involuntarily in the psych hospital. All it takes is someone calling the cops and the cops deciding, with or without basis, that their course of action should be to drop them at the psych ward. (There have been people dropped in by family this way when they weren’t a danger because of convenience, because of care giver stress, and because of property conflicts.) Some cops just automatically assume if they are on a psych call to take you in. It begins a 72 hour “psych hold” where you are unable to be discharged or check yourself out until a judge reviews your case. You no longer have control about your treatment or much of your life until the judge hears from one of those doctors enough to discharge you.

And FYI: Danger to themselves or others? Already an EXTREMELY broadly interpreted category. There are people who WERE NOT an actual danger to themselves who were just visibly mentally disabled who have been picked up on that phrasing because someone saw them alone muttering to themselves and decided they, the abled person, felt unsafe and called 911. There are people who confessed suicidal ideation (thoughts about suicide) who didn’t have any INTENT or actual DESIRE to act on any of the ideas to friends who, because of cultural messages about what to do in that case, called the cops to “check” on them- and their friend got put on a 72 hour psych observation hold. 

I have lived my life in fear that someone would misinterpret my words or behaviors as “dangerous”- and let’s be frank, the way the media has treated people with Mental Health Disabilities, basically looking “crazy” in public can make some people feel threatened- and I would be picked up. I had about half my teen voluntary hospital stays been coerced because the threat of an involuntary stay where I would have less say about leaving and be taken less seriously by the doctors while I was in treatment. 

Oh, and you protesting that it was a mistake? Can be listed as a psych symptom depending on what staff you get. You not meeting their ideas about what you should act like as a psych patient? You obviously are benefiting from the structured environment/medications. You not basically laying back and complying with what they say to do, regardless of if you have serious concerns? You obviously need to stay longer. And it isn’t your perspective or your write up of the situation that the judge looks at to let you go- it’s the case notes with the above “observations”. You best be praying you have compassionate staff who get that forced and coercive treatment isn’t as effective. 

And all of these opportunities for misuse and abuse of the system? ARE UNDER THE OLD STANDARDS. These new standards are even worse. 

I’ve lived under the old standards in California and only rarely was I committed as a “danger to self or others or gravely disabled” when I actually was any of the three.  And don’t forget “gravely disabled” because that’s the third way you can get taken in.  They could finagle anything you did into evidence that you were a danger to yourself, a danger to others, or gravely disabled.  Anything.  I’m serious.  It’s really easy to get committed in California, it’s one reason I don’t live there anymore.  I have been committed for walking down the street looking “disoriented” (i.e. how I look most of the time).

231 notes

9:58am July 18, 2014

➸ Wanting To Be Crazy - Irit Shimrat and Persimmon Blackbridge Yack - Lunatics Liberation Front, 1998

A really interesting discussion of the psychiatric consumer movement, the survivor movement, the mad movement, and what it means to be crazy, and to experience insanity, in a society where it’s thoroughly medicalized and stigmatized.  And they raise a question really interesting to me:  What would it be like to go crazy in a society that was actually prepared to deal with it in a reasonable way.  

The usual LLF-related content warnings apply, including that if you’re uncomfortable with crazy people calling themselves crazy, you probably  should read with caution or not read at all.

17 notes