— Jiddu Krishnamurti (via beejayway)
This is a very simple
butand very important concept. (See what I did there?) These two phrases would be heard very differently:
“I love you but I need you to respect my boundaries.”
“I love you and I need you to respect my boundaries.”
The word ‘but’ negates whatever came before it, while the word ‘and’ signifies that whatever comes next is a logical extension of the thought.
You know what having a mental disability is?
It’s never asking for accommodations you know you desperately need because you’ve been taught that you don’t deserve them.
It’s being afraid to say you can’t do something or tell someone that you need help because you know they’re just going to guilt you about how they thought you were “stronger than that” or “why can’t you get over it.”
It’s the fact that being seen as disabled is mutually exclusive from being seen as “functioning,” and if for one second you look like one, then obviously you can’t be the other.
It’s the fact that “functioning” for you is held up to the exact same standards as everyone else who isn’t disabled, and functioning any less than “highly” (perfectly) means you’re worthless and can’t be trusted to do anything right or well.
It’s the people who love you never, ever being able to grasp the fact that “irrational” or “all in your head” doesn’t change the fact that you experience what you experience and it fucking hurts.
It’s people telling you that you need to smile more, or speak up, or try harder because “everyone has bad days.”
It’s people saying things like “well at least you can walk” because physical disability is seen as more valid and real than your disability.
It’s also, at the same time, nobody saying you’re “brave” or “inspiring” for managing to do things outside of your limitations.
It’s being told you’re horribly selfish for being the way you are, and being expected to change that and never fight with it ever again.
It’s people you love honestly telling you that they’ve suffered too because of you, and it’s so difficult to deal with you, and you should be grateful they put up with it.
It’s being eyed in the hallway because you’ve been labeled “dangerous” even if you haven’t actually hurt anyone.
It’s being told you’re just “doing it for the attention,” and being told that needing attention is bad.
It’s being told in order to be good or valued that you need to somehow magically make yourself all better.
It’s relatives asking all the time if you’re “still” taking medication.
It’s people listening to neurotypical people more than they listen to you because everything you say is automatically discredited because you’re insane, or broken, or some other bullshit excuse for ignoring you.
It’s being told that it is impossible for you to know what’s best for you.
It’s never getting a “get well soon” card when you’re being treated because no one expects you to “get well,” or thinks there’s anything for you to get well from.
It’s having to repeatedly explain that there’s only so much you can do, and to please not push you, but no one listens.
It’s being reminded every day of your life that you are a weak, horrible, diseased thing, and that first and foremost your kind should be eradicated from the genome instead of treated.
It’s fighting with your insurance repeatedly over whether or not your condition is “legitimate” enough to be covered.
It’s hating yourself, and feeling like a burden, and being incredibly lonely, and being marginalized because there’s something wrong with you.
It’s looking in the media and seeing 9 out of 10 portrayals of someone with your condition being a manic, screaming, uncontrollable lunatic; or a drooling, childlike, oblivious dullard; or any combination thereof. (What I’m saying is, negatively stereotyped all to hell. And if they’re not a bloodthirsty villain, they’re a plot bus.)
It’s probably having multiple slurs against yourself solidly ingrained in your own vocabulary.
It’s having hordes of people question or genuinely outright not believe your disability even exists.
It’s your employer or school never accepting your sick days because you aren’t really “sick.”
It’s syrupy fountains of superficial pity being poured over you whenever it’s convenient.
It’s having your condition romanticized and glorified to the point where everyone is surprised and disappointed to find out that in real life it’s ugly, and messy, and makes you absolutely miserable.
It’s getting fired for all of the above, even if you’ve never made a mistake any worse than your abled coworkers.
It’s wondering every fucking day what you did to deserve this.
That’s what it’s like.
I bolded the ones I found most relevant (to myself). This post just absolutely nails it. I felt like crying reading it.
Children should remain silent, and they are ‘good’ when they’re quiet, but ‘bad’ when they are not, because they are disturbing the adults and causing trouble. This attitude runs through the way people interact with children on every level, and yet, they seem surprised when it turns out that children have been struggling with serious medical problems, or they’ve been assaulted or abused.
The most common response is ‘well why didn’t the child say something?’ or ‘why didn’t the child talk to an adult?’ Adults constantly assure themselves that children know to go to a grownup when they are in trouble, and they even repeat that sentiment to children; you can always come to us, adults tell children, when you need help. Find a trusted adult, a teacher or a doctor or a police officer or a firefighter, and tell that adult what’s going on, and you’ll be helped, and everything will be all right.
The thing is that children do that, and the adults don’t listen. Every time a child tells an adult about something and nothing happens, that child learns that adults are liars, and that they don’t provide the promised help. Children hold up their end of the deal by reporting, sometimes at great personal risk, and they get no concrete action in return. Sometimes, the very adult people tell a child to ‘trust’ is the least reliable person; the teacher is friends with the priest who is molesting a student, the firefighter plays pool with the father who is beating a child, they don’t want to cause a scene.
Or children are accused of lying for attention because they accused the wrong person. They’re told they must be mistaken about what happened, unclear on the specifics, because there’s no way what they’re saying could be true, so and so isn’t that kind of person. A mother would never do that. He’s a respected member of the community! In their haste to close their ears to the child’s voice, adults make sure the child’s experience is utterly denied and debunked. Couldn’t be, can’t be, won’t be. The child knows not to say such things in the future, because no one is listening, because people will actively tell the child to be quiet.
Children are also told that they aren’t experiencing what they’re actually experiencing, or they’re being fussy about nothing. A child reports a pain in her leg after gym class, and she’s told to quit whining. Four months later, everyone is shocked when her metastatic bone cancer becomes unavoidably apparent. Had someone listened to her in the first place when she reported the original bone pain and said it felt different that usual, she would have been evaluated sooner. A child tells a teacher he has trouble seeing the blackboard, and the teacher dismisses it, so the child is never referred for glasses; the child struggles with math until high school, when someone finally acknowledges there’s a problem.
This attitude, that children shouldn’t be believed, puts the burden of proof on children, rather than assuming that there might be something to their statements. Some people seem to think that actually listening to children would result in a generation of hopelessly spoiled brats who know they can say anything for attention, but would that actually be the case? That assumption is rooted in the idea that children are not trustworthy, and cannot be respected. I’m having trouble understanding why adults should be viewed as inherently trustworthy and respectable, especially in light of the way we treat children."
s.e.smith/meloukhia is a dear friend of mine, who is also made of everything that is amazing in the world.
People, read this and pay attention.
Since embarking on my intense detailed quest to find out about my own Autism, I have read countless articles, academic studies, books, and personal anecdotes about the one thing that causes the greatest and deepest anguish among Autists – the so-called lack of proper Theory of Mind.
My own mental and emotional state has run the whole range from the eureka moments, to concrete realisations, to self affirmation, to self-loathing and yes, common to many Autists who really care, an overwhelming drive to overcome and overcompensate for what we are incessantly told is our lack, our weakness, our negative handicap. However, from out of this quagmire, one nagging question has slowly arisen. If these wonderful clever reports are accurate, which no doubt they are to a certain extent, then why is it that the folks with so-called expert adeptness at Theory of Mind never seem to be able to figure out what I am thinking, feeling, or needing? Nearly half a century of existence, and I am still trying to expiate for my terrible Autistic “sins” — to no avail — even with a whole lot of explaining and positive overtures to find a common ground. Nope. Very little success.
I have found love and acceptance among a very very few, but these view me with a kind of sweet, patient, doting fondness and, sometimes, an over-protective instinct, rather than as an equal to be discovered, uncovered, savoured, and communed with. These wonderful people who love me so much, to whom I owe much of my survival, they love me to bits. But they do not understand me. And none of them has ever made the effort to even read one single book on Asperger’s Syndrome, even when I pleaded to them to do so. Nope. They are happy with their own perception of me. And should I even dare to be ungrateful? I don’t dare to revolt. So long as they accept that I am weird, I am odd, I am different, and just care for me, what more can I ask for?
I long for real depth of communion. Thus far, I have only found two individuals with whom I can speak freely and honestly, without the danger of shocking them, and with better than 50% understanding. They are far away — one in New Jersey, one in New Mexico.
Where are the people so clever at Theory of Mind? I have not met any, except for those who have been really clever to find my weak spot and use me, abuse me, manipulate me. Is this what neurotypical Theory of Mind is all about then? How to read others’ thoughts and intentions in order to dance around the campfire of a subtle complicated game of power? In that case, I don’t want to know. I don’t want to be a part of this grand “theory,” this epic convoluted drama of cruelty and delight in suffering.
That is what the academic studies never tell you. They just show you what you lack, compared to the others who have it. But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic — but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.
How could you say I have no empathy when I am thrown into the depths of hell, crying into the empty suffocating darkness as I resonate with your pain, your terror, and your grief? How could you say I have no compassion when I ache to be of help and comfort to you while you kick at my face? You want me to read between lines that you don’t even bother to write, you want me to see beyond my own world into yours, but you don’t deem me worthy enough to share it with me.
To those who think that having a Theory of Mind is so enviable, think again. Is not literal honesty, straightforward caring, and just being willing to listen when spoken to, is this not enough grace and beauty to offer to a world full of mental and emotional game-playing?
Theory of Mind. Indeed. Whose?"