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7:44am July 24, 2014

I want a movie where…

…a disabled person’s anger at their caregivers is viewed as justified, rather than displaced anger and self-pity regarding the fact that you’re disabled at all.

Yeah, I’m lookin’ at you, Passion Fish.

Which, by the way?  When I complained (years and years ago) about caregiver neglect/abuse/incompetence on an autism forum where most people did not have caregivers?  A “helpful” person recommended that movie to me, told me I’d like it and find it useful.

The basic story is about a paraplegic woman who keeps having problems with caregivers and firing them, until she gets one caregiver (a Magical Negro, IIRC) who “sees through” her anger and recognizes it as self-pity over being disabled, and then proceeds to get her to quit drinking and become a happier person and all this shit.

This is what I was recommended by my fellow auties when I complained of caregiver abuse and neglect and incompetence.

This is what I was recommended by my fellow auties when I complained that I was only getting two meals a week.

One autie, who had never seen me in my life, proposed the idea that I passed as neurotypical (I don’t and to my knowledge never have).  And that the reason I was being neglected was that I “didn’t look like I needed help”.  And that I should look at it from the perspective of a hard-working, working-class caregiver who has always had to work for everything they’ve got, who has to come into the house of someone who “doesn’t look like anything’s wrong with them” and is getting something for nothing.

I never did get an apology from this woman when she saw exactly how autistic I look.

Not that it should’ve mattered.  Even if I’d passed for NT, my caregivers were literally starving me.  They were not following their own job descriptions.  And when they did actually cook for me?  Sometimes they were so incompetent that they’d put large chunks of rock salt in my rice, or for “beans and rice” they’d give me rice with entirely uncooked, rock-hard beans.  So even when I was given food, it was often inedible.

The recommendation that I watch, and gain ‘wisdom’ from, Passion Fish, under the circumstances especially, was insulting and offensive.  Fortunately I didn’t actually see it until years later, or I’d have been so furious I’m not sure what I’d have done.

So I want a movie where a disabled person’s anger at their caregivers turns out to be justified because of abuse or neglect or something along those lines.  Not one where it’s just displaced anger that is “really” just anger because they’re disabled, or something along those lines.  (Because you know that when disabled people get mad, it’s really because being disabled makes us angry and bitter and self-pitying, and what we really need is a good kick in the ass from an abled person to help us see what we are doing in a new light.)

Also just the fact that I was on a mailing list for autistic adults where I was the only regular poster who had caregivers, said a lot.  As did the fact that people who’d never been in the situation felt perfectly justified lecturing me about it, based partially on really bad movies they’d seen about disability.  I did try to tell them “I heard that movie was full of really bad disability stereotypes,” only to be told something like “stereotypes have to come from somewhere, it’s a good movie, you’ll really relate to the main character”.

Yeah I’ll relate to the main character who is painted as too picky about her caregivers and too angry at them for no reason, while I’m starving, and being fed literally inedible food, when I get fed at all.  And I’m supposed to “understand” how these “hardworking” caregivers see me, which this person is only guessing (badly) at anyway.  (From what I could tell from actual conversation with caregivers, most of them assumed I had serious brain damage, if they weren’t told my disability.  So, no, they weren’t thinking I was nondisabled.)

So.  Again.  Movie where  at least some caregivers are abusive, neglectful, incompetent, or some combination of the three.  Because that’s not rare, but is rarely portrayed.  And where the disabled person or people get angry about this.  And where the disabled person’s anger is portrayed as justified.  And not as displaced anger at their own disability.  Maybe their anger even makes them do something like file a successful APS complaint or something.  This would be wonderful.  

Also knowing more autistic adults with (formal or informal) caregivers would be wonderful.  I know there’s at least more of us here than there were among the active members of that list all those years ago.  If there had been people with a lot of paid caregivers coming in and out a lot, there would’ve been someone who related to what was going on with me, because you can’t have more than a certain number of paid caregivers without running into some who are either neglectful, abusive, or incompetent.  Sometimes all three at once.  I’ve got a really good set of caregivers right now — utterly wonderful people — but I never take that for granted.

12:26am July 24, 2014

“We are used to ignoring our own bodies. “These carrots are too spicy” we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?”

— 

Scarred by Kate at Thinking Autism (via disabilityhistory)

Oh so true.

(via soilrockslove)

I was always told “that didn’t hurt” if I said “ow”.

So I stopped saying “ow”.

I lived with severe chronic pain, never getting below a 6, from the time I can remember existing.  Like some of my first memories are that when I tried to connect to my body closely, I’d get blasted with pain, and I’d dissociate to get away from it.  It was some kind of neuropathy or central pain, we don’t know which.  I didn’t communicate about it until I was 15, at which point I was told it must be seizure activity because Neurontin made it better.  Then several different meds later, I told that story to a doctor at the age of 22 or so when the pain had got so bad I was bedridden for a month (had to personally retrain myself to sit up for long periods), and she said that sounded like neuropathy and prescribed Neurontin on the spot, even though I’d been careful not to name Neurontin during my description, I just said “an epilepsy medication”.  

So 22 years of searing, horrible pain that “didn’t exist”.  Didn’t start writing about the pain until I was maybe 18 and found that lithium made it somewhat better.  But I’m glad I got off lithium because that shit is dangerous.  Anyway, when I got on Neurontin, I had to revise my entire pain scale.  What I had called a “1” before was now a “6”.  That’s how bad the pain was.  And I had to revise my ability to detect overload, because it had always been associated with the pain becoming more severe, and with the pain treated, that was much more subtle if it happened at all.

Now I’m on Lyrica and Trileptal instead of Neurontin but they still treat it well.  I tried to reduce my Trileptal recently and ended up in complete agony pain-wise.

Anyway, it makes me angry that an autistic child can grow up in this kind of pain, in this level of pain, with nobody noticing, and everyone saying “that didn’t hurt” all the time.  With neuropathic pain, everything hurts — your clothes hurt, being brushed against hurts, the air on your skin hurts, all the things I was told “didn’t hurt”, hurt like hell, and go on hurting a long time after the initial touch is over.  I remember having these “afterimages” on my body, like someone would brush past my arm and for an hour my arm would burn in that location.  But “that didn’t hurt”.

And this is also behind several near-death situations where I didn’t communicate about pain for any number of reasons but one was who would even believe me.  Or I did communicate about pain but lacked the correct body language so was written off until I hit the point of organ failure.  Or things like that.  And then they wonder at the fact that when they give me trigeminal nerve blocks, I’m the one patient who doesn’t squirm or grimace or cry out during the procedure.

And then there’s the whole “They don’t feel pain like we do” thing to contend with.

4:26pm July 23, 2014
Anonymous asked: if you don't mind me asking what tools do you use to communicate with doctors?

I use a communication device.  Usually I type into a computer (using Proloquo), and sometimes I use picture symbols on an iPad (using Proloquo2Go) if I can’t type.  

I usually type out a list of my concerns beforehand and then play each one out loud, that way I don’t take up time typing during the appointment, except for spontaneous stuff that can’t be done any other way.  I also always bring someone with me to the appointment to help me remember things (my memory for things like what happens in appointments really sucks) and to help me communicate if I can’t communicate something.  Also to back me up if the doctor doesn’t trust what I’m saying, and to advocate for me if I can’t advocate for myself.

I’m part of a group though (AASPIRE) that is putting together a tool to make communication between autistic people and our doctors easier.  It basically takes all your concerns about accessibility and such and prints out a letter for your doctors to read.  I would love to use that once it becomes more widely available.

9:29am July 23, 2014

Autism language politics and history

realsocialskills:

Some people emphatically prefer to be called people with autism. Others get very offended. Some people empathically prefer to be called autistic people. Others get very offended. There are reasons for all of that.

They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.

For intellectual and developmental disability:

  • Most self advocates have a very strong preference for person-first language
  • Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”

Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.

Regarding developmental disability.

  • Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
  • This is for the same reasons people with any sort of developmental disability usually prefer person first language
  • In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”

Regarding the destructive autism parent community:

  • This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
  • They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
  • They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
  • They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
  • These parents have an emphatic preference for person first language. They say “people with autism.”
  • What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”

There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:

  • A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
  • But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
  • Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
  • For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
  • They call themselves autistic or Autistic.
  • In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”

Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context. 

And there’s also an autistic self-advocacy community that is separate from the DD community and also separate from what most people call “the autistic self-advocacy community”.  That self-advocacy community is heavily affiliated with a parent community that also prefers person-first language.  In many cases, people in that community prefer “person with autism” both because of the history of their community, but also because for them being called “autistic” has always meant “you are nothing but your autism and you are nothing but a walking collection of symptoms”.  Which is a much more common experience for people in that community, because they tend to be people who were considered low-functioning for their entire lives.  AutCom — as originally constituted, not as recently-blended — is a good example of such a community, so are any communities that are largely made up of FC users.

4:43am July 23, 2014
boycottautismspeaks:

Love this one! Oh and P.S.We are glad you were not prevented either Ibby!#boycottautismspeaksImage Description: picture is of Ibby Grace smiling with a gray hat on, glasses on her face, she is peering through a circular window and behind her is a bunch of green foliage at the Japanese Gardens at Chicago Botanical. Text reads: I can not live independently and was kicked out of school. clocks and calendars baffle me and sometimes the sounds and smells of daily living knock me for a loop. i’m autistic, Happy to be alive,and grateful I was not prevented.

boycottautismspeaks:

Love this one! 

Oh and P.S.We are glad you were not prevented either Ibby!#boycottautismspeaks

Image Description: picture is of Ibby Grace smiling with a gray hat on, glasses on her face, she is peering through a circular window and behind her is a bunch of green foliage at the Japanese Gardens at Chicago Botanical. Text reads: I can not live independently and was kicked out of school. clocks and calendars baffle me and sometimes the sounds and smells of daily living knock me for a loop. i’m autistic, Happy to be alive,and grateful I was not prevented.

4:43am July 23, 2014

electricheck:

Fairy shark mother does not support self-diagnosis

http://fairysharkmother.com/post/92572003027/both-my-mother-and-i-believe-that-i-may-have-sensory

i’m out

"No space is safer"!?! "Her mission is to bring joy and understanding"!?!  Wow…

4:41am July 23, 2014
boycottautismspeaks:

‪#‎boycottautismspeaks‬ Autism Speaks believes that if you are not successful by NT standards, you must be miserable. If they would bother to ask, they may find out different.
Image description: blue background with clouds Text reads:I am Autistic. I can’t live independently I haven’t achieved success as it’s defined by neurotypical standards.Autism Speaks wants you to believe I am miserable & shouldn’t exist.But, I am HAPPY & WORTHY of an existence.Humanity & happiness should not be defined by the things one can & cannot accomplish.No one should ever have to prove they deserve to not be dehumanized. Boycotter K #boycottautismspeaks

boycottautismspeaks:

‪#‎boycottautismspeaks‬ Autism Speaks believes that if you are not successful by NT standards, you must be miserable. If they would bother to ask, they may find out different.

Image description: blue background with clouds Text reads:I am Autistic. I can’t live independently I haven’t achieved success as it’s defined by neurotypical standards.Autism Speaks wants you to believe I am miserable & shouldn’t exist.But, I am HAPPY & WORTHY of an existence.Humanity & happiness should not be defined by the things one can & cannot accomplish.No one should ever have to prove they deserve to not be dehumanized. Boycotter K #boycottautismspeaks

4:37am July 23, 2014

clockworkcrow:

i keep reading up on autism symptoms in trying to figure out what specifically i am and it’s like

i read descriptions of autistic experiences written by allistic adults about autistic children and it’s like no, that’s not very much like what i experience… then i read descriptions of autistic experiences written by autistic adults about what they experience and it’s like… well that’s almost exactly what i experience.

and of course finding anything talking about autistic adults is next to impossible so it’s like.

ugh. idk.

There’s over a hundred books out there written by autistic adults, maybe over two hundred by now.

The problem you are probably having is this:

Nonautistic people write about how they view us from the outside.

Understanding how their descriptions apply to us requires several abilities on our part:

1.  Understanding how other people see us and our actions.

2.  Understanding how nonautistic people see us and our actions.

3.  Understanding the (often wrong) things nonautistic people infer about the reasons for our actions.

It took me ages to gain those abilities, but once I did I could see exactly how and why I was diagnosed with autism by nonautistic people.  But first I had to come to understand myself through the eyes of other autistic people.  Our own self-descriptions are more accurate than the descriptions from outside of our point of view.  But the descriptions from outside are what drive diagnosis and much of research.  It really took me a long time to realize exactly how autistic I looked, because I could not see myself from outside, let alone from such a strange point of view as nonautistic clinicians have of us.

For instance, they call our routines and rituals nonfunctional because they can’t understand the function.  They call our body language and nonverbal communication lacking because they can’t see most of it.  And on, and on, and on.

4:33am July 23, 2014

Unpopular Opinion Below

holmestiel-love:

Or popular and unvoiced, idk.

Everyone in this tag knows that the word r****d is a slur and should never be said, but I’ve also seen people say that “idiot” or “wanker” is also ableist.

I don’t really see it as such. I realize people who have been called these things as part of their oppression can find these things triggering or upsetting, but I can’t really find it in my heart to call it ableist. And I try to be pretty sensitive about that stuff.

Maybe it’s some internalized ableism I still have left, idk, but that’s how I feel right now.

Popular and unvoiced.

Popular and suppressed, even, by people who really really want you to believe that the disability community is united on these matters.

It’s not.

I personally think that calling things like ‘stupid’ a slur is diluting the meaning of slur down to meaninglessness.  Stupid can be used in ableist ways, but mostly is used in non-ableist ways, and either way, it does not universally (or at all, really) reduce the humanity of a person down to subhuman the way a genuine slur does.  I fear people are losing touch with the meaning of ‘slur’, using it to mean any word that can have connotations that are ableist, rather than using it to mean a word that can only be used to dehumanize and degrade a specific group of people to an incredible degree.

4:30am July 23, 2014

Autism does not equal cancer

friso1990:

Autism does not equal cancer

Autism does not equal cancer

Autism does not equal cancer

And fuck you for saying that!!!!

FUCK my dad is autistic and he is dying of cancer and he will fucking tell you which one is worse.  FUCK ALL THAT JUST FUCK IT.

There are people who literally say “I wish my child had cancer instead of autism” (I think that’s even the title of a book about autism) and it makes me want to… I won’t write all the violent impulses I have, but they are strong.

4:25am July 23, 2014

More from the Tesla documentary

"What he lacked were the social skills, and that’s an enormous shame, because it interfered with his ability to use that genius, to be practical."

Still watching the documentary on Tesla, that’s an exact quote from one of the talking heads they have discussing his life.  They keep describing severe sensory issues, eccentricity, lack of understanding (or caring) how the business world worked (to the point of financial ruin), inability to predict how other people would use (and steal) his work, and lack of social skills.

And again, I keep thinking, neurodivergent in some way.  Has to be.  Of course I’ve heard of this before with him, and again I’m not fond of retrodiagnosing celebrities, but come onsomething was going on here.

3:08am July 23, 2014

Watching a documentary on Tesla.

One, wow he had sensory issues.  I mean seriously he had hyperacute hearing, he could hear watches ticking three rooms away, carriages from several streets away… I’m not much for retrodiagnosis but he was at least neurodivergent in some way, and I’m guessing more than that.  

But two, it turns out, from what I can read between the lines, that he got a lot of his inventive streak from his mother.  If it had been his father, there would have been a lot more time dedicated to that.  Since it was his mother, there was a brief description of her inventions and creativity and skill as a weaver, and that was it.  When clearly she was a huge influence on him.  But being female, apparently she isn’t worth as much mention as when men get such traits from their fathers.

ETA: He couldn’t stand perfume, touching people’s hair, or shaking hands, either.  Sensory issues galore, seriously.

He also claimed, according to this, to have “destroyed his sexuality at the age of 40”.  Interesting.

12:26pm July 22, 2014

realsocialskills:

is it common for autistic people to over-emote when talking? (i.e. making cartoon-like faces, moving hips a lot.) if not, is there a specific word for people who tend to do that?
realsocialskills said:
   
I do that, and I know other autistic people who do as well. I think it’s common.
   
I don’t think it’s over-emoting though. It’s just body language. The fact that neurotypical people usually move less doesn’t mean their amount of physical reacion is right and ours is excessive.
   
It’s just different.
 
I don’t know of a word for that kind of body language. Do any of y’all?

I’ve met a lot of people with cerebral palsy who do it too.  I often wonder if it’s something people do when they’ve had to learn the motions really really carefully.

12:19pm July 22, 2014

autism regressing talking to self

autisticdrift:

Talking to yourself really freaks people out, doesn’t it? 

I guess it’s often stereotypically seen as a sign of being mentally unstable? For me it’s a form of entertainment and/or a way of narrating what I’m doing so I don’t goof something up or forget what I need to do. 

In fact, I do it so much, that my kid will say to friends who are visiting, “she does that a lot, just ignore it.” 

Not sure about the regression part of this. Might be that the person who has started talking to themselves is under more stress than usual or getting overloaded a lot. The “talking to self” might be part of a bigger package of accompanying skill loss and attempts to cope with all of the above. 

My autistic friend talks to herself all the time, as a way of guiding herself through activities.

One time she was in the store and realized she was talking to herself.  She noticed people were staring.  So she said “Stop talking to yourself, you’re scaring the other customers.”  Out loud.  :-P

6:40pm July 20, 2014

soilrockslove:

Yeah, so no sense of time and no direct depth perception… makes driving interesting. Speed is distance/time so this does lead to some issued deciding how fast things are going. XD

Fortunately I’ve gotten very good at finding alternate ways of doing these things.

Wow good luck with that.  Even if I weren’t epileptic, my vision is too fucked up to allow myself behind the wheel, and I think some of my time perception stuff fucks some stuff up too.