Theme
2:33am June 6, 2015
madeofpatterns asked: I didn't mean they were faking autism. I meant that they're faking... *everything they're asserting*. They're faking their concern. They're faking their relationship to you. They're lying and lying and lying.

Yes, that they are. Absolutely.

4:22pm June 5, 2015
madeofpatterns asked: They are the ones who are faking.

Quite possibly, but I don’t like to point fingers unless I have to.  Real autistic people can be bullies about this stuff too.  And I don’t like to put out the idea that everyone evil in a community is just a faker.  Although I do know bullies will fake membership in a community in order to gain access so they can bully more readily.  I’m just not willing to become a faker-hunter.  There are enough of those as it is.

8:20am June 5, 2015
madeofpatterns asked: Even if you were somehow faking everything (and I know you're not), you still wouldn't deserve what they're doing to you. No one deserves that.

Exactly.  And I’m not.  But the targeted cyberbullying is obnoxious.

And yes I’m still getting anon hate, discussing cyberbullying seems to bring the cyberbullies out of the woodwork sometimes… this time it’s a so-called autistic person claiming to be embarrassed to associated with me and asking rhetorical questions about “what’s your diagnosis NOW?” (listing two diagnoses that I have now, one that I had in the past, and one that bullies convinced me to act as if I had, claiming I had it and didn’t know it, and who got written up in my psych records for doing so, as people who should never be allowed to talk to me again)).  I’ve blocked the person’s IP address but who knows if that will stop them.

I don’t know why people like that even show up in someone’s inbox.  Like if someone were truly faking autism, I would want to know why.  There are a lot of reasons someone might do it, many of which are pretty innocent. The only time I would get mad, is if they were doing it to infiltrate the autistic community as a reporter or something – something that actually happened once, and that person got less shit, for a shorter period of time, than I have gotten even though I’m not actually faking autism.  I was initially diagnosed when I was 14 and barely had heard of autism, and I’ve had the diagnosis confirmed by people whose job is to deny as many people as possible.  (They interviewed me and my parents as well as reading through the records of previous diagnoses.)  Which again puts me with more proof I’m autistic than many prominent members of the autistic community who are not singled out for such harsh bullying.

Another thing that gets me about this, is that the behavior people think they’re seeing when they look back on me in adolescence, even if it really was what they think they are seeing… is normal behavior for an adolescent, autistic or not.  Adolescents try on new identities that are not actually real, as part of coming to terms with who they are.  That’s not all that I was doing, of course.  

In my case, I was trying to survive a psychiatric system where if you didn’t act out the diagnoses they gave you, in detail, then they said you were in denial.  At one point this would have delayed me being allowed to live at home again.  And they could hold things like that over your head, saying you’ll be allowed to go outside if you just admit to this, you’ll be able to go with us on car rides if you just admit to that, etc.  

So I learned to live down to whatever expectations I was given, and because I was thorough, I attempted to live down to those expectations even when I was alone in my room and nobody was looking.  It made me feel utterly awful, like the worst person in the world, but I’ve since talked to other survivors of the psychiatric system and they report having to do similar things to get out and go home. 

There was another thing I acted out that wasn’t just the psychiatric system.  It was a pair of bullies who were interested in psychology and used me as their guinea pig.  One of them gave me the FAQ for an online support group for a certain condition.  I thought it was an instruction manual for how to behave in the support group, and again being thorough I behaved that way outside the support group too.  Meanwhile they were both trying to convince me that I really had this condition and didn’t know it, so when I acted as if I had it, they praised me for “doing so well” and stuff.  I thought this was how you made friends (it also followed on from some other things  I’d learned that I thought were just part of everyone’s social facade because they were part of the social facade of one of my few friends, who was a cousin if not on the spectrum themselves).  Eventually I realized it wasn’t real and left and apologized taking all responsibility onto myself, even though most responsibility there was not my own.  Those same bullies who got me into the situation now gleefully point out that I apologized and therefore I must have just liked faking things that weren’t me.  They also point out that I went right on at that point to the next thing I was “faking”, which I already described above as a product of extreme psychiatric coercion.

Bullying people for having been successfully bullied in the past.  Bullying grown adults for what they did as teenagers, many of which were normal things for teenagers to do even if the weren’t doing them for the normal teenage reasons.  Bullying people for doing what they had to do to survive a hostile, abusive, and sometimes life-threatening psych system.  These are all much worse things to do than faking something for attention.

Not that I’ve ever faked anything for attention, it’s just not my style.  I’ve said I have, usually when lacking other words to describe why I did something, but that’s pure echolalia at its finest and nobody even believed me at the time because they knew I wasn’t.  

But one day I thought, “What if I was?  What if I just liked to act like this for attention?  Would I deserve how I’m being treated?”  And the answer I’ve always come back to is “No.”

That was when I started looking into the DPW community.  It’s a community of people who fetishize disabled people (D), people who pretend to be disabled (P), and people who truly want to be disabled (W).  I found myself squicked out by the D, because they almost always fetishized helplessness and saw disability as part of that.  Some of the P’s and W’s wanted to (or wanted to pretend to) be disabled because they fetishized helplessness, too, and that bothered me as well, but that was not the majority of what I was reading.  The majority of what I was reading was a community of fakers and wannabe disabled people who had found each other and  honestly reading the sort of things they did, I found them far less bothersome than I find identity policing within the disabled community.  I’d far rather deal with them than deal with bullies who like to look at everyone as a potential faker, or who single out a specific person and call them a faker whether they’re really a faker or not.

There is one context where faking for attention really offends me.  And that is when people pretend to be dying of cancer or something like that, and then amass all these online friends, all this support, including from other people with cancer who have limited emotional energy to expend on someone who doesn’t actually really have cancer.  Some of them get a lot of money that way too.  I saw someone doing that (and spotted them as fake right away, actually, which is rare as I don’t go looking for that, so it must’ve been obvious) and she caused a huge amount of devastation and loss of trust.  But what got her caught was not just not meeting stereotypes of her condition (which is what people use against me – “you’re not an LFA stereotype, or an HFA stereotype, so you’re not real at all” and they usually try to claim that I’m claiming to be LFA, which I’m not), it was things that were seriously at odds with reality, like things that were not just improbable but impossible, and tons of those stacking up over time.

So I understand some instances where people fake things and it has devastating consequences for everyone around them.  And people like her also make me mad because they make people like me suffer.  Meaning, they make people warier and warier of everyone they meet online, and other people start getting so that if you don’t meet stereotypes of a condition you must be a faker at worst or mistaken about yourself at best.  So every time a genuinely harmful faker does their thing, they’re hurting people who are not faking at all but are the most vulnerable to accusations of faking.  And they’re also hurting people who are faking but not hurting anyone.

I’m sure there are fake autistic people in the autistic community.  I’m even sure I know who a couple of them are.  I would never say their names, and they’re obscure enough most people wouldn’t know their names if I did say them.  But it gives them a community and that’s something they badly need right now.  So I say more power to them, they are not doing any harm, they mostly lay low and interact the exact same way real autistic people do, so it’s not like they’re doing the kind of damage someone does when they fake dying of cancer.  The autistic community is large enough to absorb them without taking damage, and they get the companionship they are looking for.  And I would not expose them even under torture.

I’ve also seen at least one person where I was very suspicious of their claims of being autistic, who was (in order to cover for their own discrepancies between their story and reality) always the first to jump to accuse anyone and everyone else of being fake autistic people.  That is damaging, and hypocritical as well.  Anyone who promotes an atmosphere of rooting out the “fake autistic people” is someone who promotes an atmosphere where those of us who don’t fit stereotypes are the first up against the wall, as the saying goes.

That’s why I continue to speak out against this, even if it gets me bullied more.  You notice how the anon haters came out of the woodwork the moment I mentioned cyberbullying?  They are trying to shut me up.  They honestly think that after all I’ve been through, their actions are going to stop me.  Nothing can stop me now.

It will help me and others targeted in this manner, the more people who speak out, and the more people who leave supportive comments to people who have been targeted by cyberbullies, whether in accusations of faking or in other respects.  Accusations of faking are a favorite to use against disabled people because they play into a suspicion most nondisabled (and many disabled) people have, of this idea that disability gets you all these perks and that therefore people like to fake it all the time for attention.  Fakers are actually rare, and most people accused of faking are, like me, people who don’t fit certain stereotypes, or people who are politically inconvenient because we’re outspoken against certain injustices both inside and outside our communities, or both.  I’m both.  

I’m also, like many people singled out for serious targeted cyberbullying rather than the occasional drive-by, someone who has inconvenient stuff in my past on the Internet that can make me look bad if you take it the wrong way.  The thing is, if you took everyone’s lives, and put it all somewhere public where it would exist forever, then everyone would be vulnerable in the exact same way.  Because we all do things that look bad to people who don’t understand why we did them.  And we all do things that look like one thing and are actually another.  And we all do things that really were bad but that we’ve changed since then.  And we all do things that look worse than they actually were, when taken out of context by bullies.

Everyone who takes the bullies’ word for it, and then sends me anon hate, has turned into a bully themselves, by the way.  So, anon, whoever you are, you’re a bully.  You’re a cowardly bully, too.  Rethink the choices you’re making.  I’ve legit come close to death many times the past year and am dealing with my dad’s death right now.  One thing we both learned is that the closer you get to death, the more love matters as the only thing in the world that matters, and the more everything else falls away.  You can’t love and act from hate at the same time.  When it’s your turn to die, you’ll have to look yourself in the mirror and ask yourself whether you acted from love enough.  I hope my face, and the face of anyone else you have bullied, stares at you back until you realize what a hateful person you have been.  And then I hope you turn to love in the end, because what will happen to you otherwise is not going to be good for you or for anyone you care about.  Think I’m exaggerating?  I’m not.  I’ve come close enough to death these past few years to have a choice whether to live or whether to let go and die, and so far I’ve always had a chance to live.

Another bit of food for thought for anon:  If I’m faking, why do I have a feeding tube?  And I’m talking a GJ tube, not one of those nasal ones you can fake by buying one and sticking part of it up your nose.  They don’t give out GJ tubes to people who don’t have tons of objective medical proof that we need one.  I had to fight to get mine, not because I didn’t need it, but because they thought my quality of life would be too low once I got it.  If they’d thought I didn’t need it, they could have sent me home from the hospital and refused to give me a tube.  

Medicare would never have covered the tube without proof of gastroparesis (gastric emptying study), proof of severe and sudden weight loss, proof of how little I was eating even on Ensure (monitored around the clock in the hospital), proof of my lung disease bronchiectasis (high-resolution CT scan), proof of aspiration pneumonia (CT scan, x-rays, rattling lung sounds, coughing up green stuff, etc.), and all that put together got me the GJ tube.  Without hard proof, they’d never have given it to me.  Nobody can get a GJ tube without either needing one, or at least having all the medical conditions to need one (but that’s a mistake, not a case of faking).  You can’t fake your way into a feeding tube.

So if I’m such a faker, anon, and I’m faking all these medical conditions, why do I have equipment that is hard to get even when you need it, and that can’t just be bought and installed at home?  I also have an InterStim implant that I could not get without a urodynamics study and a lot of physical therapy (with objective measurements of how I did and did not progress) first.  And I have a port (central line), which I could not get without multiple hospitalizations, multiple PICC lines, etc., due to bad veins, and without enough legitimately diagnosed medical conditions that they’re pretty sure I’ll land in the hospital often enough to need to use the port.  (Which is used in place of an IV for people who either need things you can’t give through an IV, or, like me, whose IVs infiltrate every few hours or so when you can get a good vein to begin with which is rare.)

They don’t give you implants without proof.  And you can’t give yourself implants.  So if I’m fake, where did all my implanted medical devices come from?  And if your answer is “I don’t know,” rethink whether you really think I’m faking things or not.

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.

12:20am November 1, 2014
A new old rock friend, found again while packing. I think it’s Jasper but I’m no expert on the names of rocks.

A new old rock friend, found again while packing. I think it’s Jasper but I’m no expert on the names of rocks.

8:56am October 7, 2014
one-dinosaur-in-a-human-body:

Pitufos house.

one-dinosaur-in-a-human-body:

Pitufos house.

6:15pm October 5, 2014

dear NVC people

madeofpatterns:

I do not owe you attention.

I do not owe you dialogue. 

I do not owe you intimacy.

I do not owe you an explanation.

Your feelings are not my obligation.

10:29pm October 4, 2014

madeofpatterns:

recoverykitty:

chelsea-cakes:

I was looking at ideas for costumes that would go around my wheelchair and I found all these! How cute are these kids!

Omg

Wheelchair costumes are the best.

10:29pm October 4, 2014

madeofpatterns:

I don’t think healthy and ethical should be synonyms.

10:29pm October 4, 2014

madeofpatterns:

I don’t think unhealthy should be a euphemism for abusive.

10:28pm October 4, 2014

asylum-art:

Spectacular colour  into this arid Utah desert by Guy Tal

“Every few years, for a few fleeting days, when conditions are just right, these otherwise arid lands burst into color with carpets of Scorpionweed and Beeplant.” - Utah’s badlands"

The Badlands region in the American West is famous (or infamous) for its arid and unforgiving landscape, which is decorated by sharp and eroded spires of stone. If you catch it at just the right moment and in the right conditions, however, these apparent wastelands can give birth to an extraordinary explosion of color and life in the form of beautiful wildflowers.

12:46pm October 1, 2014

And then [Vimes] realized why he was thinking like this.

It was because he wanted there to be conspirators.

It was much better to imagine men in some smoky room somewhere, made mad and cynical by privilege and power, plotting over the brandy.

You had to cling to this sort of image, because if you didn’t then you might have to face the fact that bad things happened because ordinary people, the kind who brushed the dog and told their children bedtime stories, were capable of then going out and doing horrible things to other ordinary people.

It was so much easier to blame it on Them.

It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone’s fault. If it was Us, what did that make Me? After all, I’m one of Us. I must be. I’ve certainly never thought of myself as one of Them. No-one ever thinks of themselves as one of Them.

We’re always one of Us. It’s Them that do the bad things.

— 

Terry Pratchett, Jingo (via captainofalltheships)

Why I feel the concept of “privilege” has outlived widespread usefulness.

It makes you miss this.

(via fierceawakening)
12:23pm September 30, 2014

After reading about gender-bias and conversation dominance in the classroom, I asked for a peer to observe a physics class I was teaching and keep track of the discussion time I was giving to various students along with their race and gender. In this exercise, I knew I was being observed and I was trying to be extra careful to equally represent all students―but I STILL gave a disproportionate amount of discussion time to the white male students in my classroom (controlling for the overall distribution of genders and races in the class). I was shocked. It felt like I was giving a disproportionate amount of time to my white female and non-white students.

Even when I was explicitly trying, I still failed to have the discussion participants fairly represent the population of the students in my classroom.

This is a well-studied phenomena and it’s called listener bias. We are socialized to think women talk more than they actually do. Listener bias results in most people thinking that women are ‘hogging the floor’ even when men are dominating.

— 

Stop interrupting me: gender, conversation dominance and listener bias, by Jessica Kirkpatrick from Women In Astronomy

Implicit bias is a thing, just like privilege. Calling it out isn’t meant to shame anyone, but to alert us to step it up and improve ourselves so everyone can have a voice. Be conscious of what you and others are saying, and know when not to speak.

(via scientific-women)

I wonder if I’m really taking up as much space as I think I am

2:57am September 30, 2014

madeofpatterns:

not anti-psychiatry, but anti  some aspects of it

I don’t like how it conflates all these things:

  • people who have neurological problems that affect cognition or movement
  • effects of past trauma, current abuse, or unsuitable environments
  • people who create problems for other people

I’m anti-psychiatry, but I don’t think people know what I mean by that.  This is extremely long so it’s under a cut with a TL;DR at the end.  But please don’t respond to me if the only line you’ve read is the above one, because you will not grasp what I mean.

Keep reading

2:13am September 29, 2014

madeofpatterns:

androgynistic:

if it’s inaccessible to poor people it’s not radical 

and if it’s something that involves rich people paying a lot of money to look at poor people, it’s not a powerful transformative experience

On the first one:  I’m lookin’ at you, TASH.