In SOLA, Louisa Martin makes an important clarification regarding the concept of neurodiversity. The term still carries within it a presupposition of a neurological 'norm' against which other minds can be identified as divergent, abnormal and possibly degenerate. She writes:
‘YES neurodiversity carries the right sentiment, but look at the etymology. We are still centring neurosciences in our self-definition, and we are still centring the normal from which we diverge. And coupling it with diversity – a word from failed inclusion policies based on numbers and not systemic change.’
For conventional diagnostic purposes the idea of 'normalcy' is likely most useful for determining psychological, physiological and neurological standards across societal, cultural and geographical bounds, but there is also something lost in the process.
Creating norms and averages always reduces complexity and flattens out difference. There is, however, also one crucial administrative positive produced by the levelling process: it saves time – or at least it does in the short term. In the long run, the expediency of standardisation has a knack for producing more work and more discomfort (to put it lightly) as the idiosyncratic nature of the human body and mind finds a way to reassert itself.
Consider the standard model of treatment against which the prescription of highly addictive opioids was excused in the United States. What lay at the bottom of the pharmaceutical industry's opioid marketing campaigns was the citation of a single letter written by a doctor named Hershel Jick, and his post-graduate student Jane Porter and published in the January 1980 issue of The New England Journal of Medicine. The title 'Addiction Rare in Patients Treated with Narcotics' plainly stated the argument of the five sentence text, and it contained the statement:
'we conclude that despite the widespread use of narcotic drugs in hospitals, the development of addiction is rare in medical patients with no history of addiction.'
Despite the fact Porter and Jick's letter spoke about addiction rates in a specific context, for people closely monitored and in hospital care, for pharmaceutical companies like Purdue Pharma (manufacturers of the drug OxyContin) the specific context of the pair's assertion was side-lined and the letter became a solid scientific basis for the assertion that their drugs would not be addictive. In Dreamland: The True Tale of America's Opiate Epidemic the journalist Sam Quinones writes:
'By the 1990s, it would have alarmed Dr. Hershel Jick, to know that his letter to the editor, which he had long forgotten, had become a foundation for a revolution in U.S. medical practice'
'It's unclear who retrieved the Porter and Jick letter from obscurity. But it appears to have been cited first as a footnote in Kathy Foley and Russell Portenoy's 1986 paper in [the journal] Pain. In time, the paragraph became known simply as Porter and Jick. That shorthand, in turn, lent prestige to the tiny thing and the claim attributed to it: that less than 1 percent of patients treated with narcotics developed addictions to them'
Once the myth of non-addiction became accepted as standard, whole communities of people in the U.S. (from college athletes to labourers) became locked into opioid addictions that led many to heroin, fentanyl, and a vortex of chemical dependency, desperation and death.
Rather than a standard, cookie cutter approach to pain prevention, what was needed was a case by case consideration of the specific conditions of each patient. That such an approach may strike some as impractical or unrealistic, speaks volumes about how far societal expectations regarding healthcare have become shaped by the limitation of the respective systems in place in the U.S. (private, costly and out of reach) and the U.K. (overstretched, time-short, and numbers oriented).
What about normalcy and systemic change? Well it's clear that in order to do away with the former it's necessary to alter the latter.
Consider the relationship between schizophrenia and autism. The first half of the 20th century saw both 'conditions' caused by failures in parenting. Depending on who was making the assertion, they could be blamed on a lack of affection, or too much affection. For a while they were also both considered to be the same thing. In Neurotribes, journalist Steve Silberman writes:
'to [psychiatrist Leo] Kanner, autism was not merely an eccentric cognitive style or an alternative mind-set. It was a tragic form of childhood psychosis, akin to schizophrenia, caused by inadequate parenting.'
For the most part, such thinking is now outmoded, but in general the perception remains there are two distinct conditions called schizophrenia and autism, as does the notion they're aberrant and defective mental states that must be treated and cured. But these ways of thinking proceed from the notion that they are both to some degree illnesses and that suffers must be helped to bend and shape themselves into the behavioural moulds and perceptual norms modern society requires. As if what stands for 'society' in our neoliberal present is that rational and fair a system in the first place. Perhaps it's society that should bend and shape itself to meet the needs of others?
Again, that such a simple idea would strike some as utopic highlights how the perceptual tyranny of standardisation dominates. What also dominates, in the discourse and debate surrounding such ideas, are the voices of clinical practitioners, specialists and academics; the voices of those who are speaking for others.
When we were thinking about this project we knew that we wanted, in some small way, to allow people to speak for themselves. And the three works presented in this site all offer something that is far too thin on the ground in the 'health-space'. They all offer insight. For us this seems to be the most vital route towards challenging perceptual norms, and moving the immaterial force of consensus towards a new paradigm through which systemic change might be possible.