Internal Struggles

When there are things you can only talk about with yourself, how to end that discussion? Who to end it? What if you just want it to end?  This last question was one she decided to keep to herself. It was a conversation stopper that invariably started up a therapy session of sorts. Therapy and conversation were mutually incompatible. Therapeutically she was someone’s project, some thing to be reformed into not asking herself that question.

“Damn!”, she thought, “Here I go again.” The weather was nice. The company not entirely mind-numbing. She was a success. Quite the life of the party but – or could it be because -somewhat dead inside. It was exhausting to live life as if she was not asking herself ‘that’ question. She did, in myriad versions, like: am I not harsh enough on myself or am I too harsh? She was funny that way, so harsh on herself it bordered on self-mutilation.

Invisible of course, Continue reading

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Pain and Guilt

I didn’t do what I set out to do. It left me feeling guilty. The reason was pain. I slept badly because of pain. I woke up in pain. I tried to ignore the pain and wrote some mails which gave me and others some pleasure. Then I tried to rewrite my paper on neurogradualism as I set out to do but the pain got the better of me. So instead I just crawled up in bed and managed an hour of half sleep that was entirely unrefreshing. I only half woke up feeling full on guilt because I caved in. As penance I did my physical exercises. Painful as that is, I know that, whilst it does not keep the pain away, it increases my chances of doing what I set out to do another day.

“Hold your head up.”, people say, not realizing that is what I – literally – spend most of my days doing. Hearing “Chin up!” is what really gets me down. Sometimes it knocks me out. Shouldn’t I just try harder? Am I too easy on myself? Do I really have enough pain for me to escape that many responsibilities? All these fighting metaphors really wear me out, it’s a chronic illness many healthy people do not realize they carry.

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The Escape

She was sitting in the waiting room. A nurse told her there had been an emergency. She had no clue how long ago that was. The nurse seemed alarmed – his big body wanting to pull away to whatever the matter was while his gentle face remained with her for a short moment. There, there, he said, we won’t be long. Was this long? Sessions lasted for about 45 minutes she knew. Is that long? She thought about what she was to tell the doctor. She always had to tell something to the doctor, who would listen patiently and silently as she would move about restlessly. She hated silence. It made her hear herself more clearly.  So she tried to think about what she was to tell the doctor. She envied the doctor who had it all worked out. All worked out except for her maybe. That was her fault – going around in circles, waiting for some sign that would never come.

She heard a rustle. Suddenly he was there. I’m Guido, he said. I”m Agnes, she said, before she could even be startled. It is about 45 minutes then, if this is the next patient. But was he? Are you?, she asked. What?’, he wanted to know. The next patient? He didn’t answer.  The whiteness of the room was always painful but – when Guido opened the door to the doctor’s office – a flash of light hit her in the left corner of her left eye. She closed them to follow the flash turning into a fireball bouncing around in her sleep. Come, Guido waved at her with one long arm, the rest of his body already disappearing through the doctor’s door. She hesitated. The arm became every shorter but kept waving until there was only a hand, palm upright fingers gently beckoning her to come. It was not allowed, she knew, even if nobody had ever told her that. Some things you just know although most people – she knew – knew more things in that way than she did.

Afraid to remain for another unspecified time in this silent white room, she stood up and followed suit. Continue reading

Strangers amongst us

We struggle with strangeness. Whether we fear who’s different or merely fear those who fear the different differently from us, home’s where our differences largely go unnoticed. It struck me how self-evident it has become to see public announcements, on a hurricane for instance, accompanied by somebody translating them into sign language. It’s difficult not to see this as progress; therefore difficult to see it as anything but self-evident. But it’s not self-evident. It’s the outcome of a struggle by strangers incapable of hearing and once discarded by society and probably labeled “deaf and dumb”. Well, it is their struggle and that of caring people who provided an understanding home to them in which they could be understood and, hence, come to their own understanding. How did they realize such a remarkable feat making acceptance of deaf people into something “so general as to make it unthinkable to see it as someone’s original idea”? The latter is Kafka’s description of that immediate insight which, once made, seems to become so entrenched in custom it is like it could not have been otherwise. Wittgenstein would probably say it becomes part of the grammar of deafness that it is a difference that ought to be accommodated. Still, however self-evident it may seem now it was anything but self-evident not so very long ago.

How can that be? What can we learn from it?

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Autism: beyond the Catch-22

My research starts from a tension between a disorder view of autism, as codified in DSM-5 , and a positive identity view of it, as advocated by the neurodiversity movement . In the DSM-5, autism is defined behaviorally and at the same time coupled to an innate developmental disorder. For a diagnosis additionally the criterion of dysfunctioning has to be met. From the autistic point of view (specifically in cases, like mine, of being diagnosed with autism as an adult) this means getting entangled in a moral dilemma, in the Catch-22 mentioned above: “If I accept to be autistic I am considered crazy, but if I do not accept to be autistic I go crazy.” I argued that going beyond this Catch-22 requires taking into account the ethical dimension when trying to answer theoretical questions as to ‘what autism is’.

Below is a short (well, 1000 words) English summary of my Master’s thesis in Philosophy, the full summary can be found here and a summary in Dutch is published here.

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Looking for my Brod

“When he’s always asking me” the a detached from the sentence flew away like a ball in the field. is the best I can do to translate the second sentence of Kafka’s diaries. I have no clue whether that comes close to the original: “Wenn er mich immer frägt” das ä losgelöst vom Satz flog dahin wie ein Ball auf der Wiese. Does it matter? What is it to be close? Why am I pretending to be anywhere near the same ball park as Kafka?

Such constant questioning leads to a detachment in which a thought separates itself from its context creating a new trajectory most probably just to fall flat on its face somewhere out in left field where it perishes unattended. The urge to write is however stronger than the frustration with not being read, so here goes: a musing on why peer review processes do not always eliminate the bad and, more importantly, not always discover the good.

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The arrogance of empathy

You want to feel my pain and you want me to feel yours. I suffer from chronic back pain. I am autistic. I am also a middle-aged white male born from middle class parents. You do not feel my pain. You cannot know how it is to have an autistic perspective. And I cannot feel what it is like not to be privileged. All we can do is try to understand each other. And to do that the first thing we need to do is to accept what the other reports and accept it at face value. Literally at face value. Because when you say (or I say) that we feel the other’s pain we deceive ourselves into knowing something we cannot know. We are frauds. And, no understanding can come from fraud whatever good intentions we may think we have.

Now you may say that the word empathy doesn’t exactly mean that. You might be right. It is a word and therefore something that needs to be understood in context. Like you need to understand me in context, I need to be give you the benefit of the doubt. That said, you cannot feel my pain, you cannot take my perspective for that would simply be arrogance, and arrogance never leaves room for self-doubt. “What then?”, you might say (if you feel for me enough to be open for my perspective, otherwise just leave this – and me – be).

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