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Is all behaviour communication?

I was browsing a Facebook group for neurominorities last night and some chap has rather aggressively said that we’re all wrong when we advise parents that all behaviour is communication (something that comes up a lot when parents of neurominorities ask neurominorities for advice).

After thinking on this I have decided that he’s technically correct. The phrase is wrong… Or it could be improved on…

Behaviour as communication seems to imply, or be understood by neuronormative parents, that there’s an intent behind those behaviours, some sort of manipulation on the child’s part, whether deliberate or not, but we know that’s just not true. It makes assumptions about deliberate intent that are just pure supposition and not based in fact at all (which, it seems to me, is exactly what Theory of Mind is reduced to at times, despite the initial intent of the theory!)…

So… Would it not be more accurate to say that all behaviour is communicative? As in, you can assess a need, a want, a problem etc from observing the behaviour? There isn’t necessarily any intent to manipulate or express anything but the behaviours are still indicative of inner workings…

So… In the future I will be saying that behaviour is communicative. It is more accurate and gives my brain a happy!

Ok… I’ve rambled enough for one day. Have fun, folks!

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Neurotypical Bashing…

I wrote this on my Facebook earlier after getting some pretty upsetting messages from so called friends who told me that they were fed up of being attacked for being neurotypical by me recently. I thought I’d share it here, unedited, as it makes some good points that I thought might resonate with others…

Ok… So… There has been an increasing amount of what folk will probably interpret as “NT bashing” coming from me recently and I shall attempt to give some context.

I have just today received three inbox messages berating me about it. So allow me to calmly (and it is calmly, I am not currently angry so please read this missive in the calm tone intended) respond.

This is not an apology. There will be no apology. No apology is needed on my part.

I came to the realisation a few years ago that my entire life was based on a lie. A very aggressively perpetuated lie. This lie was created and enforced by neurotypical people in a neuronormatively created and controlled society.

As a result of this lie, I have been abused, traumatised, pathologised, dehumanised and oppressed in ways that I’m only just now beginning to understand.

I’m currently in the process of figuring out who I am now. Where does the trauma end and I begin? Is it as simple as that? Is there a me at all without that trauma? Which parts of me are trauma responses and which parts of me are unaffected by that trauma? So far I have discovered that very little about me, if anything at all, has developed without that particular trauma having a profound effect.

Looking back on my life, with this new perspective, has brought up a lot of feelings. I am now grieving for the lie because the lie was all I knew and I’m attempting to claw back some control after a lifetime of having none. That is a long process. I am processing. In a way that I’ve never been allowed to before. I am allowing my nervous system to take stock and figure out that it is no longer in danger. That I don’t have to be on constant alert for a fight and my nervous system is fighting back because all it knows is to fight, to defend, to be on the offensive as a defence mechanism.

With this comes anger. I’ve done the sadness. I’ve done the despair. I’ve even done the denial. Now I’m in the anger stage.

I will say this in a way that is authentic and I will be unapologetic with it so be prepared – I AM ALLOWED THIS ANGER!

When I was younger and put into one of the many anger management programmes that abused me into thinking that certain other abuses were my own fault I was told something that stuck with me – There is justifiable anger and unjustifiable anger.

THIS. IS. JUSTIFIED.

My entire life was a series of traumas that were blamed on me by neurotypical people. I get to feel that anger and if some of that spills over into areas of my life that cause comment then I’m not going to apologise for that. I’ve been drowning in justified anger my whole life that was used to silence me. I’m not doing that anymore.

If you feel attacked by this, you may want to take a second and ask yourself why because if what I’m saying makes you uncomfortable enough to respond in ways that try to speak over my experience then you’re part of the problem. I can’t say it any plainer than that.

We’re in a political climate right now where minorities are being both listened to and oppressed in ways like never before. Neurominorities are a part of that. We are oppressed minorities. Before you react or respond, ask yourself if you’d say something like what you’re about to say to an ethnic minority or a gender-identity minority. If not then you need to check that and I won’t apologise for pointing it out.

I’m putting boundaries in place in a way that I never have before. The people who have loved and supported me and empowered me to do this should feel proud but if you find yourself instead rolling your eyes, wanting to argue with me putting those boundaries in place or expressing my very justifiable anger at the trauma that I’ve suffered and the oppression I’m still suffering under then this may be the end of the road for our friendship or acquaintanceship because I am no longer going to just let it go and automatically put the needs of others before my own. I will take all needs into consideration and sometimes I will choose myself and my own needs.

So… I will acknowledge that the change in tone of my feed and the change in me as a person may seem like an abrupt and perhaps antagonistic change to some and I will acknowledge that it may make people uncomfortable and change their opinions of me and cause them to question if we should continue our relationship or if it should be changed… And that’s totally fine. People change. People should change! And sometimes that change is so drastic that we grow apart from the people we were close to or in community with before… And that’s ok too!

What is not ok is expecting me to dilute this self exploration, this processing of thirty years of trauma to stop others from feeling uncomfortable. I won’t do it and any person who respects or loves me wouldn’t ask me to. They’d acknowledge my right to this anger, even if they don’t like it. None of my anger is directed at individuals unless I specifically state so and I will very rarely do that in a setting like this. There has been profound anger at some individuals and that anger has been, mostly, confronted and I’m in a much better place with it… But this general anger at society and the situation in which I find myself is not yet processed and I’m not going to rush or silence it for the sake of others. It’s my turn.

It’s my turn to have my feelings. It’s my turn to be who I am. It was always my turn… Just as it’s always yours. If you have anger, express it! But it is unjustifiable anger if it’s directed at a minority or a trauma victim speaking out and expressing their justifiable anger or truth.

Just some things to consider…

Deficit? Disordered?

I’ve been thinking a lot lately about the neuronormatively assessed and created labels that are attached to neurominorities.

I was unofficially diagnosed with ADD (attention deficit disorder) in my teens, twice. Both Educational Psychologists said it was very certain but they wouldn’t diagnose me. The first because I’d use it to get attention (well, duh! GIVE ME EXTRA ACADEMJC SUPPORT! That’s literally the point!) and told my mum to hide it from me so I didn’t even know until the second Ed Psych assessed me in college. He said he wouldn’t make it official because I’d never get a good husband. He said I’d never achieve anything. My brain wasn’t built for it, according to him. The best I could hope for was to marry a man with a good job and let him look after me.

These days we’ve discovered that as well as this ADD, I’m also autistic and I’ve been on quite a journey of self discovery since… And one thing that bothers me over and over again is the way we’re pathologised. Over and over again we’re belittled, labelled incorrectly and then negatively judged for those incorrect labels…

This may seem like I’m slow to recognise this, many of you may have been noticing this for years… But this is where I’m at on my journey since discovering my neurology. I’m at the anger stage.

I don’t have a deficit of attention. I have an inability to meekly conform to demands on my attention that have no interest or use to me.

I’m not disordered. I have a neurology that pushes back at being oppressed, abused or toxically manipulated!

So… At this point in my journey I have made the decision to throw off the labels of my oppressors. Not all of them. Autistic works for me. Just the deficit models.

So… I don’t have pathological demand avoidance or oppositional defiance disorder (don’t even get me bloody started on that one! In fact, I may make it a blog all of its own!) or attention deficit disorder. I have Non-Conformist Neurology.

I will not and never have conformed for the sake of conformation. The only times I have confirmed against my own judgement has been in situations of abuse and oppression and I won’t do it anymore. I refuse.

And I’m taking a stand with my labels. I have Non-Conformist Neurology. I am a Neurominority woman with Non-Conformist Neurology.

I am not disordered. I do not have a deficit. I am not a little girl you can pat on the head when she gets her conformation and neurotypical assimilation correct. I am not a figure to hold up as inspiration porn when I get something right or a thing to be pitied when I fail because you never expected me to succeed but wasn’t it just darling that I tried!

Be non-conformist with me. Let’s call it what it is. I have failed my whole life to conform to THEIR wants and THEIR expectations and was never allowed to have any of my own!

Well… No more.

Come be an anarchist with me. Eat your Kit-Kat without snapping the fingers off. Wear sandals in the rain. Use an umbrella in the sun. Say “curses!” instead of “bless you” when someone sneezes! Colour your puddles green and your clouds red!

My name is Debi and I have Non-Conformist Neurology.

Limited

A word that’s seen a lot in relation to neurominorities is limited.

We have a limited capacity to understand. We have a limited verbal ability. We have limited learning potential. We are limited in our ability to empathise.

Limited.

But is it truly limitation? Or is it oppression?

Is it we who fail to empathise with others? Who ostracise anyone who is “other”? Is it we who don’t see things from others’ points of view? Is it only we who fail to effectively communicate? I don’t believe so. We’re being oppressed. We’re having limitations forced upon us by the very people doing the things they accuse us of. It’s probably the longest and most insidious form of gaslighting the world has ever known.

It never occurred to them, it still doesn’t for most of them, that someone may think in a way that differed from their way. It never occurred to them that effective communication comes in many forms. It never occurred to them that other might be good. We’ve seen it over and over again, the oppression of anyone who is “other”…

And yet… Of course we know that others think differently to us. We’ve known that our whole lives because the second we can make coherent thought and try to express it, they oppress it and force us to outwardly change that expression. They force conformation and when we don’t comply, when we don’t conform, we are “othered”… We are bullied, we are punished, we are chastised, we are corrected; we are oppressed.

So, from today I refuse to accept any label of limitation. I will proudly say “I am not limited. They are your limitations, not mine. I won’t be bound by them any further.”

It’s quite liberating. Say it with me.

I am the Other

In the first of our Magical Women series, we have an offering from… Me… I’ve been writing for Magical Women for over a year and have found the experience liberating and empowering. Here is one of my latest poems.
This piece came about when my therapist and I discussed identity. I felt that I didn’t know who I was without the identity labels given to me by others and she suggested writing these labels down. There were a lot. Every one of these has been said to be either literally or metaphorically. It paints a dire picture… I much prefer the identity I’ve found for myself after unpicking all these things and shedding the identities others tried to force on me.

I am The Other!

I am the mouth
I am the scowl
I am the attention seeker
I am the noise

I am the stim
I am the nuisance
I am the bother
I am the burden

I am the one
I am the common factor
I am the storm
I am the mess

I am the ousted
I am the nothing
I am the useless
I am the forgotten

I am the unwanted
I am the never
I am the forsaken
I am the statistic

I am the faceless
I am the not
I am the rootless
I am the nameless

I am the blamed
I am the deliberate
I am the feckless
I am the inconsistent 

I am The Other!

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We See You…

We are very excited to have our very first guest post! This poem was submitted by an Autistic writer who wishes to remain anonymous for self-esteem reasons.

We see you,

We love you.

You with your ear defenders.
You with your clicking fingers.
You with your hidden eyes.
You with your flat shoes.

We see you,

We love you.

You in the binder.
You in the wheelchair.
You with no speech.
You with flapping hands.

We see you, 

We love you.

But you…

You with your one dimension.
You with your gold glazed eyes.
You in your mouth seat.
You in your blue suit.
You in that big house.
You in the big chair.

Why don’t you see them?Why don’t you care?

I’m here with open eyes.
I’m here with open arms.

My people are your people.
They’re here and they see.

We see you!

We love you!

Verbal Diarrhoea… Oh dear…

What to do when, after decades of personal oppression and centuries of community oppression, you’re asked for your input on something that your community should be running themselves already?

I mean, on the one hand, you jump at the chance! Of course you do… On the other hand, when finally given a chance to speak… How on Earth do you manage to shut up?

Myself and a fellow autistic student with the Open University were just in a meeting with two staff members who are organising some upcoming tutor training on understanding neurodiversity and the needs of neuro-minority students. We were very excited to find that not only did they actually want to include us, they were also enthusiastic about not shutting us up, even if we wished they had for the purpose of focusing the meeting!

I’ve always struggled with knowing when to shut up and it’s caused me no end of problems. I either don’t speak at all, even when I should, or I start talking and don’t stop. So when I’m actively encouraged to speak, after a lifetime of being told to shut up… I’m not entirely sure how to handle it at all… But it would seem that, contrary to what all my teachers wrote in school reports, my verbal diarrhoea may be useful after all!

Take that teachers who said “will never accomplish anything unless she learns to shut up!”

HA!

That said, a bit of control would be nice… I’m going to work on that…

In the meantime, I have custard donuts!

An Aided Epiphany


Content Warning – Discusses some childhood traumas, dysmorphic disorder, bullying and mental health consequences of trauma.

Earlier today I tweeted this article from the Neuroclast website. It questions whether autism is, in fact, a social development issue at all and explains the theory of autism actually being a “sensory-movement” issue, where our neurology interprets and responds differently to any number of stimuli, not just the socially motivated ones, and that this is how the misunderstandings arise.

This makes a lot of sense to me, for a number of reasons.

Firstly, whenever the majority of researchers try to explain anything to do with autism from a behavioural or social perspective, they fall woefully short of describing the realities of the autistic experience. They pathologise, infantilise, disorder and other us. It’s demoralising and dehumanising but it’s also based on a lot of assumption and guess work. In fact, during my degree so far I’ve been surprised at just how much guess work there is out there, being used in policy and resource creation for people who they clearly don’t understand! But that’s a different issue for a different day.

The thing that struck me on a personal level about this theory is that it explains the deficits between the behaviourist model and the actual experience of living as an autistic person. Drawing on executive function issues, stimming, echolalia and more, it takes you through the nervous system and explain the chemical and neurological aspects and how they manifest in real life situations.

All my life people have hated me. I don’t pretend that I didn’t sometimes do something to deserve it, I can be rather obnoxious, but the majority of the time, I was despised before I ever had the opportunity to do anything to instigate it! I can walk into a room full of complete strangers who can’t possibly have any pre-assumptions or knowledge of me and before I speak or even make eye contact, they despise me and they do so in such a way that I can physically feel it! I get called a liar or an exaggerator over this a lot but I think some of you out there will know it’s neither. You’ve experienced it too.

I tried so hard to make that different, first by trying to be as unassuming as possible… Or as unassuming as it was possible for such a young child to be… And then I tried to control the narrative. This was the method that sticks with me, even now. If people are going to stare at me, I give them something to stare about. I’m loud, I’m the clown, I’m the witty banter girl who draws attention with humour and self-deprecating wit! … Because showing humility and debasing myself like that publicly makes people hate me less. They either shrug me off as an attention seeker who isn’t worth paying attention to or they see through it all completely and see an extremely insecure person… Well… That was the plan anyway… And in some small cases it did work. For the majority of cases though, I just made myself an even bigger target… I gave them something to blame their despise of me on and then expanded on it, making my life miserable and getting me to blame myself for it. I was too loud, it was my fault. I was an attention seeker, it was my fault. I was mouthy, I deserved it. I didn’t know my place, I got what was coming to me. I was a pathological liar, I needed a smack.
Even now, as an adult who tries my hardest to reign those impulses in, I still get this immature, school yard bully, behaviour levelled at me. No matter how demure, self effacing, quiet or charming I am… And believe me, after years of working with armed forces veterans, I know how to be charming… They still hate me.
I get accused of being aggressive, no matter how calm and laid back I’m deliberately being.
I get excluded, insulted, spoken over, attacked and any number of really demoralising and socially humiliating things.

The explanation I got when I was younger was that it was my face. I can’t tell you the amount of times someone or other took it upon themselves to break it because they were sick of “being forced to look” at my ugly, disgusting, gross, pathetic or whatever awful word they looked up in the thesaurus first, face… I now have rather crippling dysmorphic disorder… There is one mirror in my whole house and it took me years to agree to that single mirror. I rarely take pictures of my face and it’s a source of great upset and anxiety when I do or when other people do it to me… But I’ve been guilted and attacked into letting people take photos of me too, no matter what my discomfort because, as one professional photographer said to me when trying to emotionally blackmail me into buying photos, my children deserve to have photos of me when I’m gone, instead of me being missing from all family photos. That really stuck with me. The idea that I was hurting my children through my inability to let go of years of brainwashing. It made me feel weak and a bad parent. So now I smile and I don’t look. I don’t want to see my face in photos… I don’t want to literally vomit and have to stop myself from clawing my face off (which I have tried to do in the past, I have the scars to prove it… Another thing I was accused of lying about by so called mental health professionals when I was literally screaming for help)… Because all of this is an overreaction for attention, right? I’m just making it up to make others feel bad or whatever… The fact that very few people know who the person behind this blog is won’t matter… I’ll still be called an attention seeker… And if I were to include a photo, I’d still be told they were right and I’m disgusting. It happened the last time I tried to discuss this issue.

I digress again… It’s a related digression but a digression nonetheless…

The point is, if it was something about my body language all along, which I’ve suspected for a little while, whilst still telling myself that the body language was something I should control… But if it was my body language, controlled by my nervous system… Then I never really had control of it to begin with and my inability to mimic them wasn’t because I’m stupid… And once again another aspect of my life has been controlled by the limitation of others, not only by my own limitations.

They say that it’s a characteristic of autism to be unable to access the Theory of Mind… But it seems to me that it’s not us that finds it difficult to put ourselves in someone else’s shoes. It’s not us that can’t understand that people think differently to us. We have to live our whole lives in knowledge of this and trying to accommodate it.

It’s not us who exclude those different to us and who have created a world that only works for one type of brain and one type of social being! This isn’t our limitation. It’s theirs!

I’m not saying that some of the responsibility shouldn’t be on us, it should… But currently ALL the responsibility of changing understand and changing behaviours and adapting is put on us! The very people they say can’t cope with change! No! We just don’t cope well with being constantly manhandled and abused into following arbitrary, non-written rules of a society that doesn’t reciprocate those demands one bit!

Ok, I made myself a bit mad a went on a tangent again… So I’m going to stop because what was a migraine is now a headache and I don’t want to make it worse by continuing to look at the screen.

Thank you, once again, for reading my rather weird ramblings.

Please feel free to disregard it all.

Dreaming and Longing…

When I was in my early twenties, an Ed Psych told me to quit college. He said I’d never finish anything, never write a book, never work with animals, never go to university and didn’t have it in me to finish anything I started.
Years before that, whilst still in high school, another Ed Psych had told me that the best I could hope for was to find a good husband, with a steady job, to look after me, whilst telling my mum that I just wasn’t being challenged enough.
This was just based off both of them assuming ADD (Attention Deficit Disorder), which they both labelled me with but refused to officially diagnose. One because he said I’d use it to try and get attention and the other because he said it was pointless for someone like me… Because identifying a “problem” is fine but giving me documentation of it isn’t “unnecessary”.

So, I quit college. I never qualified in animal care, never worked with animals after that and went into a state of depression that resulted in over a decade of crippling mental health issues, including agoraphobia that I’m not sure I’ll ever fully shake. I can count on one hand the amount of times I’ve left the house alone since 2008. I can count on the other hand how many times I’ve left the house without my husband since 2014.

I found myself a decent, hardworking husband with a good job, like the first Ed Psych suggested. It was a complete fluke. After discussions with him, which was the straw that broke the camel’s back in terms of me wanting a family, I frequently vowed to never marry or have children. But I met Himself and never looked back. He’s my safety, my rock and the steady foundation under my feet. For the first time in my life I had a protector, a real one. He didn’t understand everything about me, heck I still bloody don’t, but he didn’t have to. He just accepted me. Not “flaws and all”, unnecessarily pointing out that nobody is perfect. He just accepted me.
But after years of medical and psychological neglect, societal abuse and oppression, institutional abuse and conditioning; something in me snapped.

You know when you’re surrounded by loads of triggers that set off your danger warnings? It’s loud, there’s loads of people brushing against you, everywhere people want something from you but won’t explain what it is and pretty much all the other things that happen every time you’re in a school, work or social setting? And yet, you don’t have a meltdown, something in you, the masking probably, keeps you together and on your feet… But then you get home, to your safe space and BAM! It hits you in every possible way and you crumble… Even if it’s just for a little bit? Well, that’s what I did.
I met Himself, he made me safe and gave me, for the first time in my whole life, a refuge, a place where I actually knew, for the first ever, that I was truly safe. My brain finally got out of survival mode and had a chance to process… Well… My whole life… A life of every sort of abuse on the list. Physical, emotional, institutional, sexual… All of it came crashing down on me after a pregnancy that had almost killed me due to medical neglect. It was most definitely the last straw and my brain and nervous system just broke down.

It’s taken me fourteen years to claw my way out of that and I’ve done it with virtually no support. One mental health professional, out of the ridiculous amount I’ve seen, was helpful. The rest were worse than useless, with one or two actually triggering me into worse mental health states. It’s only in the last few years that I’ve accumulated friends who understand the whole of me, truly all of who I am, and who love me anyway. This isn’t to disparage old friends, they just have their own lives and never stuck around after I stopped socialising the way they did. Pubs and whatnot…

I did finish a novella… Years ago, partly just to prove that I could… And I’ve written a series of children’s books… Not sure if that counts, as short as they are… But I have achieved that… But this degree… If I can finish this, after being told over and over and over that I was too stupid (by the same people who also called me academically gifted to my mother! Bloody fools) and that I didn’t have it in me to achieve anything… All this they drilled into me based on an assumption of ADD and an “attitude problem”… What would they have said to me if they’d looked a little harder and discovered the Autism staring back at them?!

My biggest dream right now is to get a doctorate. Which is scarily similar to the dream I had as a little girl, before they taught me to stop dreaming, that I wanted to be a university teacher… I say it’s a dream but it’s not really. It’s a longing. I look at that possibility and sometimes may discuss it with friends with bravado but inside I keep telling myself it will never happen.

People like me aren’t empowered to succeed. It’s more than just being Autistic, it’s everything else that came as a result of it that people won’t accommodate. Even if I do manage to get the grades, despite the really appalling lack of effective support available at the OU, what uni will take someone on for a Masters who struggles to go outside alone? Who struggles to sit in a classroom setting? Who has demand avoidant issues and for whom authority figures are so triggering that my response to them switches between arse kissing and demand avoidant?

My dream will likely never come true… That’s part of the reason for this website… Even if all I manage is to inspire someone else’s dream… Someone stronger, someone who can succeed, that’s better than nothing.

That’s better than better than nothing, really. I’m used to helping people reach their potential whilst being kept down myself and if that’s what I’m meant to do then I guess it’s a noble cause.

This now sounds like a pity party… But that’s not how I mean it. Generations of women have had to smash glass ceilings, knowing full well that it would be others that reaped greater rewards. Some of us are standing on their shoulders but also having to do the same thing. I’ll be happy if that’s all I have. If I can know I’ve helped then it was all a little worth it, I reckon.

Ugh. I hate sounding like I’m whining. Being called an attention seeker is a huge trigger for me, as it probably is for many of you… But this isn’t about getting attention for me. I’m not the point. You’re the point. You and the generations who will come after you.

Our struggle is worth it if it makes it easier for people who will come next… For the ones who will be you told “you can do this” instead of “just give up.”

Wiggly Trees and other Ramblings…

I keep telling myself that I have to write on here daily for as long as I can… But I bloody hate rambling and if I keep writing for the sake of it, that’s all I’m going to write. Ramblings with no point.

I have my final assignment to write. It’s the big, end of year one where I’ll have to go back through all the chapters and all the notes and even though this is one of my absolute special interests, I still can’t muster the functioning to do it. It’s difficult to focus on the next thing when you don’t have the results from the last thing yet… And it makes me worry for the future. If this burnout is what I get during undergrad studies, what will it be like if I muster the self esteem (and the grades) to go postgrad? It’s something that worries me a lot. It shouldn’t. I still have two years of this to go yet… It’s a way off… But if my brain only thought about what I wanted it to, it wouldn’t be my brain. My brain is a bit of an ass, truth be told.
I mean, don’t get me wrong, my brain can be pretty cool too. I’m terrible with names but I never forget a face but only if I can get a look at a face when it isn’t focused on me because… Well, just don’t look at me and it’ll be fine. 🤣 But that’s a cool thing. Watching a film and knowing where you’ve seen even the most obscure actor before. I can almost do the same with voices, which is weird because my auditory working memory is crap and “faulty” (at least according to the very nice lady who diagnosed my SLDs).

The other thing I really love about my brain is the way it uses words. I can’t always get them from my brain onto the page, which is frustrating, but just hearing the words and sentences it comes up with inside is quite inspiring at times.
I remember this one time, I was out in the car and I saw this really beautiful tree! I love trees! And my brain said “see how the branches twist and writhe to reach the sun’s splendour?”… What came out was “that tree’s reyt wiggly!” (I mean, I am from Yorkshire, the accent is more obvious sometimes!).

See… Rambling!

If you’d like to see something on this blog other than my nonsense, please feel free to save my poor blog by contributing! Just use the contact form and let me know what you’d like to write!

Stay well all!

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