“You’ve seen one Ehlers-Danlos patient, you’ve seen one Ehlers Danlos patient.”
–Ancient EDS/HSD Proverb
According to the philosopher and historian of science Paul Feyerabend, science is a fundamentally anarchistic endeavor, and the notion of the uniformity of scientific method is a fantasy. The nosological and diagnostic criteria crisis in the field of connective tissue disorders is a perfect example. This is GREAT news for Zebras. We have a golden opportunity to take up the mantle of Citizen Science and join the Chaos! We can actually help solve a great scientific puzzle! Just by communicating with our physicians, PTs, specialists and other medical professionals. We wanted to stop being gaslighted an/or misdiagnosed, dismissed, or accused of being drug seekers or difficult patients by members of the medical-industrial complex, right? Let's contribute to the nosological and diagnostic criteria efforts of physicians and researchers around the globe by making our Zebra-hood known and recognized as legitimate by the medical establishment. Like the other great historian of science of the last century Thomas Kuhn famously observed, the most important changes in science have always required revolutions. Let's make it plain to the MIC that we don't just want and deserve the recognition due our dilemmas; we also want accuracy, even if that means that there turns out to be as many individuals! I jest, of course. That’s never going to happen, but my point is that we need to remember to try and always emphasize that our situation/s is/are fundamentally non-paradigmatic, viz., that it’s time for some of the old ways to die, that our uniqueness is just as much medical necessity as it is scientific puzzle; that despite many of us being neurodiverse on top of being sufferers of connective tissues disorder, we are also, even perhaps paradoxically, united by and in that diversity; and that even though we are subjects in experiments aimed at taxonomical precision, we are not only, as Susan Sontag put it in her seminal book on medical gaslighting Illness as Metaphor, we are also Citizens in The Democracy of the Zebras.
Even though Feyerabend was fond of characterizing science as fundamentally anarchistic, he usually added that he did not endorse anarchy as good government, and that his conclusions were not ideologically prescriptive and/or normative, but historically descriptive. If this is true, it entails that Zebras are yet involved in another paradox, that between the experimental anarchy of science and the attempts of the medical establishment to nosologically order its conditions, disorders, syndromes and diseases. It’s my contention that phenomenon like the invention of the Hypermobility Spectrum Disorder and similar labels are artifacts, at least in part, of a constant dialectic between the state of experimental chaos and democratic idealism, which for Zebras seems to me to usually manifest as the need to be seen and heard not only as a collective of solidarity, but simultaneously as individuals with unique, case-by-case issues.
The idea that we live in a perpetual experiment is not unusual, especially to the citizenry of the United States and those who live in countries founded upon similar moral-political philosophies and classical liberalism. Our founding fathers called the constitution a great experiment, and while their understanding of science and its methods could be construed as primitive compared to ours, there’s still plenty in it to carry their sentiment over to our times. As unsettling as the chaos of our US and US style democracy can feel to some of us right now, it only takes a brief survey of the history of those democracies to see that our contemporary situation is tame compared to events like the American Revolution, the American Civil War, and our involvement in fighting European fascism in the first half of the last century. We often hear the mantra, “We’ve never been so divided,” but surveys like this provide demonstrative evidence that’s likely nothing more than recency bias.
With appreciation and respect,
~l
this was also post at r/Hypermobility and r/ehlersdanlos
