Disabled thoughts about #ScienceMarch

Or, more correctly, about science, culture and the problematic assumptions about these that #ScienceMarch makes evident.

As a pretty logical thinker & (mostly) an empiricist, I often startle my pro-science friends when I state that I have…problems with science. And not just with the ‘bad science’, the science practiced wrongly by fallible humans, but with the ‘ideal’ of science itself. With the very notion that science is, can, or should be an ideal.

To be anti-science in this day and age is to be in league with zealots, anti-vaxxers and charlatans. But here’s the thing: science is not and can never be an ideal. It is always a set of human practices grounded in a set of human assumptions linking human perception to human sense-making.

Moreover, these practices are by definition reductive, and contingent upon framing devices imposed by the humans who enact them. Consider the ontological writings of Niels Bohr: the event of observation constrains — and thus constructs — the state of the observed system.

Less abstractly, the scientific method prescribes the systematisation of phenomena, and the exertion of control over experimental variables. Variability is considered as noise, interference, problem.

The practical effects of this are manifold. Medications and therapies are tested on white men with no pre-existing conditions, putting disabled women and PoC at risk of polypharmacy challenge and other adverse drug reactions.The subjective, individuated — and therefore unreliable — patient voice is devalued in the clinical interaction to the point where the patient becomes constructed as a barrier to the doctor’s provision of the ‘most right’ care. (Notably, patients with invisible chronic illnesses spend an average of 7 years trying to get doctors to listen to & diagnose them.) Autism research by neurotypical researchers perpetuates stereotyped, incorrect & harmful notions because research questions and methodologies are framed according to researchers’ presuppositions. (The same goes for myalgic encephalomyelitis, and too many other, lesser-known conditions to mention.)

The bottom line is that science is fundamentally contingent upon reduction, framing, and — therefore — social context. Science is always-already political because it is nothing more than enactments of human perception and understanding, which are unavoidably shaped by the ideas and power relationships through which those become.

(The power relationship enacted through the framing device is another serious problem for those of us who have historically been scientific objects rather than subjects.)

So it bothers me to no end to see science deified as an infallible, inhuman, untouchable ideal because doing so betrays a fundamental misunderstanding not only of what science is, but of what it can do and how it functions as both a product and producer of society and culture.

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard

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