Author Archives: JoB

The Charitable Gene, NeuroDiversity and Climate Change

We went viral from the outset. There seemed to be no end to our reproduction. Ever new forms of us emerged. We were having a blast. The world was soon filled with a thin layer of organisms based on us. They started to bump into each other. Suddenly this became a gene-eat-gene world. You’d call it natural selection. We experienced it as stress. It hit us: our perfection was going to be the end of us. This was not going to last. Wanting to have it all would wind up being the death of us. But: wasn’t it already too late? And: shouldn’t we just enjoy it while it lasted? We couldn’t reach consensus. Our reproductive strength was also our weakness so some of us decided to turn that weakness back into productive strength: we would diversify (as we’re condemned to do anyway by the principles of our vitality).

This is the story of these charitable genes’ last ditch effort to save the world even if a lack of self-satisfaction might require some self-sacrifice.

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Breaking the ranks

“He was pacing up and down the house. When downstairs he was pacing back and forth. The blinds were down. He was in doubt whether to open them or leave them closed. If he would open them it would mean it was business as usual. If he let them down something had changed irreversibly. The blinds took on a meaning he couldn’t shake. He was alone. It suddenly was the only thing that mattered. The only signal he could give to a world he knew probably did not care.”, General Sharma liked to tell stories and his staff liked them even if they were mostly clueless as to what they were supposed to mean. ‘Why don’t you write them down?’, an officer asked. To which his response was just a sigh. When he was ready to elaborate Lieutenant Dryker appeared. Late as usual, she seemed annoyed at all this procrastinating and clearly wanted to get on with it.

Sharma was their general in name only. He had long since devolved his operational duty to Dryker. Their relationship had always been intimate. He just happened to be a general and she just happened to be ill-fitted for being seen as one. Theirs was an odd marriage, one of mutual opportunity though. This day was different. Sharma punctual as usual was more fidgety than ever. Dryker as late as ever avoided to look at him waiting motionless but tense for him to formally open the meeting. She did not even bother to sit down next to him. He looked lost for an awkward moment that lasted long enough to create a wave of murmur in the troops. An unusual crack in their appearances so became audible. Was it because of what had happened yesterday?

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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

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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