On death and data

I have talked to many people with incurable disease, they often develop quite astonishing levels of medical understanding, becoming more aware of developments in research than their consultants. There is a heroic obsessiveness at play here a feeling that some mastery over the disease can be enacted by a detailed knowledge of it; through its indexing fetish this project shares that compulsion. This is not merely hubristic, recent research has shown that patients who are more engaged with of their disease do better than those who aren’t. There is also the macabre thought that the project will outlive me, it’ll still be there online, possibly even still producing data, at least in terms of visitor numbers.

So we can posit, that the project also touches on our attitudes to death and disease in a wider sense, namely a desire to find ways, processes and forms to transcend the act of termination and come to an accord with our feelings about it.

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