Neurodiversity and Me: A Personal Context
I am ‘Neurodivergent’. I am ‘Dyslexic’ and have lived my life negotiating what I was told was. Dyslexia is a ‘neurodevelopmental disorder’ which for many years a controversial thing. Growing up I realised how some people believed that children (like me) were ‘stupid’, ‘lazy’, ‘incompetent’ in relation to schoolwork (to some individuals); whilst others recognised that I struggled to see what was on the printed page yet could manage to negotiate tasks sufficiently when given agency.
In 2002 I attended a conference in Oxford University where I was presented with a series of papers and perspectives around Dyslexia and various neurodevelopmental disorders such as ADHD, Dyspraxia and Autistic Spectrum Disorders.
In my life experience I have encountered a great deal of misapprehension and misunderstanding around what my experience of life is as a ‘Dyslexic’. As I had discovered that I could ably do pretty much any task when given the freedom to approach the task through means which I had developed, I had the belief that Dyslexia was a problem of the Social Model of Disability.
The Social Model of Disability is a civil rights approach to disability. The Mental Health Foundation articulates this “The social model of disability proposes that what makes someone disabled is not their medical condition, but the attitudes and structures of society.
If modern life was set up in a way that was accessible for people with disabilities then they would not be excluded or restricted. The distinction is made between ‘impairments’, which are the individual problems which may prevent people from doing something, and ‘disability’, which is the additional disadvantage bestowed by a society which treats these ‘impairments’ as abnormal, thus unnecessarily excluding these people from full participation in society. The social model of disability says that it is society which disables impaired people.”
Some of the key ways people are disabled by society are:
- lack of financial independence
- families being over protective
- not having information in formats which are accessible to them.
The national symposium on Neurodiversity at Syracuse University describes it as:
“Neurodiversity is a concept where neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.
For many autistic people, neurodiversity is viewed is a concept and social movement that advocates for viewing autism as a variation of human wiring, rather than a disease. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow autistic people to live as autistic people.”
In 2002 I was presented with a number of studies which challenged me to think about Dyslexia acknowledging some physiological aspect of what I viewed as a social problem. What I perceived as an issue with the schooling system and the fetishisation of bureaucratic means of learning and human development had been presented as a physical pathology.
Specifically, the work which I had put towards me as a skeptic, said that there was – for the first time in my life – a physiological measurement of what the mysterious word ‘Dyslexia’ meant. Many independent teams had started to study the function of essential fatty acids in the central nervous system showing a collection of results indicating that there were abnormalities in the composition of the fats in the brain. Some of the issues which this caused were suggested as dark-light adaptation problems and a loss of macro-ocular synchronisation of the eyes.
There was also a series of studies which looked at how supplementation of the missing essential fatty acids could yield practical benefits for me as a dyslexic. I did not believe that taking something physical would change my experience of the world. I was directly challenged to try the work which made me uncomfortable, but nevertheless I did in the interests of examining my own thoughts on the matter.
A simple experiment took place where I tested my reading abilities prior to following the regimen of supplementation detailed by Dr Alexandra Richardson at Oxford Neurosciences. Something interesting happened, and nine months later I retested my reading abilities finding that they were a magnitude better than previously.
This anecdote in my experience with first principles correlated with the independently carried out series of studies. I was then put in the position where I was to reconcile what I had discovered with what I had previously believed. My viewpoint, through multiple conversations, reading, analysing and testing needed to evolve to what I had met with.
The result is that I started to acknowledge that dyslexia was a physiological thing as well as a sociological thing. Through whatever course of happenstance my physiological existence had been shaped by issues of processing essential fats in my central nervous system affecting how I encountered visual and written phenomena – hypersensitivity of the eyes to light and a lack of coordination in the eyes moving together seemed a reasonable explaination of what was going on.
This did not make me think that the Social Model of Disability was not pertinent, as it is a critical understanding for us to reconcile the nature of prejudice and lack of agency in our social institutions and landscape.
Prejudices are irrational and also day to day occurrences. The effects which labels have is well known to produce various social and ethical problems in the way that people are related to. People who lack agency are often ignored and are not allowed to participate in cultural activities. People get excluded by the costs of being involved as well as by kith and kin deciding what is best for the individual independently of checking the persons expressed desires.
Often information is held back from individuals when they are wanting to develop their own thoughts, opinions and consent based on information. People’s whole lives can end up curated by the politics and policy which has been devised by individuals who are distant from the subject it addresses.
As someone who is Dyslexic, I acknowledge that as I physically grew, my central nervous system was different from the norms in physical make up. Did this make me deficient ? No, I challenge that perspective. It put me in the situation where evolution works – where the physiology of my body adapts to the social and environmental circumstances of my being.
Obvious in all of this is the understanding we have of neuroplasticity. The ability of the brain to change throughout an individual’s life is well established, and as we go through our day to day lives, the activity which we do causes neurons (nerves) to strengthen and reinforce links between them.
Whatever the cause of dyslexia, the biology of my body adapted to it allowing me to evolve to the circumstances which I existed with. The nature of my social encounter with dyslexia was quite distressing, and once with label, I found that people paid more attention to what they thought dyslexia was than paying attention to me there and then.
Some people expressed prejudices such as telling me I was not capable or intelligent as a child without having engaged sufficiently with me to understand whether their postulate was true. This was interesting as it led me to an interest in the psychology of labelling and later on, the psychology of dehumanisation, which can result in a diminishing of whole human beings to a reduced version of who they actually are.
Howard Becker examined the effects of labelling in terms of psychology in his book Outsiders:
“…social groups create deviance by making rules whose infraction creates deviance, and by applying those rules to particular people and labelling them as outsiders. From this point of view, deviance is not a quality of the act the person commits, but rather a consequence of the application by other of rules and sanctions to an ‘offender.’ The deviant is one to whom that label has been successfully applied; deviant behaviour is behaviour that people so label.”
As social mammals, when people see difference there is a propensity to create ingroups and outgroups, and via this dynamic individuals are often dehumanised, reduced to less than they actually are. I recall being in ‘the special class’ and how behaviours of some children and adults turned into encounters curated around what they thought I could or what they thought I should be told.
These perspectives as to how people curate what other people get privy to made me aware that there was at least a two tiers of agency being set up in these encounters. The parent-child relationship was often adopted which was damaging to me as it restricted my opportunities to encounter perspectives and also to develop my own thoughts from first hand encounter with the ideas.
People throughout my life have set themselves up as paladins of knowledge trying to curate what I should encounter and get the opportunity to formulate my own thoughts on. The idea self replicates polarising group behaviours if not carefully attended to. This I feel expresses the social justice origins of neurodiversity and the need to critically examine the way that society is configured.
We need a society which recognises and celebrates neurological differences. If I were not dyslexic I believe that I would not have developed certain aptitudes which I have such as systems thinking or the communicative skills I have. I am no lesser a person, nor less capable, nor indeed more capable in the whole than another human being, but I am different; just as I believe that throughout our lives we neurodiverge and neuroconverge as a collective species.
If someone were to suggest to me that I am less complete a person through my dyslexia, I would suggest that they are affected by a prejudice which is preventing them from fully acknowledging and valuing my worth as a human being. I would think the same of any perspective which was to diminish someone to less than they truly are – whichever name or label they happen to tarry under.
When someone suggested to me that dyslexia was a deficiency of essential fatty acids in the nervous system then I agnostically engaged with the studies whilst reserving my view that the phenomena was rooted in the social.
If someone told me that there was a theory, a collection of ideas, a controversy that I should not be allowed to engage with on the subject of my health and wellbeing, I would ask for the same qualifications that I would ask from those who had the ideas for choosing what I can encounter and engage with on my own terms..
If some controversy based in the sciences is presented to me as decided for me, I would ask for the information on which this decision has been made I would question whether I am a part of the society which they are representing specifically as I have been actively excluded from cognicising what has taken place.
If someone set out to prevent me to meet in public spaces to listen to and encounter perspectives different to my own or involved in some controversy, I would consider this an important cultural phenomena to examine in light of agency and the freedom to learn through dialogue.
The Problem With Aristotle
It occurs to me that in the ‘western’ culture of the UK which I have lived and grown in, there seems a recurring problem with apprehending more than one perspective, truth, fact or idea simultaneously. So often we see in our culture things pitted against each other in binary oppositions which demand people decide to align with one or another. Plurality seems to be a problem for cultures which habitually place things into a series of hierarchies.
The notion that there are more than two settings – right, wrong, correct, incorrect, black, white – seems to be a default hangover from the legacy of Aristotle’s thinking. Aristotle’s thinking and reasoning were valuable contributions to culture from the 4th century BCE. His work was so influential that from the time of its writing it prompted attention stimulating various schools of thinkers far and wide. Aristotle’s work survived to the 12th century CE where it was adopted wholesale by the Christian church – all bar his work on humour which was censored.
There, in the power base of the organised Christian church, the philosophy of this Ancient Greek was used to guide centuries of thinking to come because the qualities found in his approach were useful. In Aristotle’s philosophy he suggests that a true definition gives the essence of the thing defined. Implicit in this is the notion of a single pure essence to each thing – a soul which was the form of the body.
The issue is that things are simply not reducible to such a simplistic notion of essences. The essentialism that results carries with it certain problems which Anne Philips examines about in her paper ‘What’s Wrong With Essentialism ?’. Reducing things to a perceived essence is highly problematic for various reasons including when phenomena change over time, when phenomena have multiple expressions and the artificial nature of categories.
Alfred Korzybski wrote about Non-Aristotelianism evaluating in his general semantics which denies the existence of such discrete ‘essences’. Korzybski suggests an evolution in the way we orient evaluation. In general semantics, it is possible to give a description of empirical facts, but such descriptions remain just that – descriptions – compressions of the reality which necessarily leaves out many aspects of the objective, microscopic, and submicroscopic phenomena they describe. He explains that language can be used to describe the smell of a perfume, but one cannot give the smell of the perfume.
This acknowledges and presents a solution for the problems we encounter through the categorical stances which have shaped the way we deliberate on things. Culturally there is a need to move away from binary ways of encountering the world to viewpoints which allow for richer, more complex understandings which acknowledge the nuanced existence of phenomena. More than one point of view can be valid at in certain situations simultaneously, and goodness knows we need a holding ground in which to explore ideas which are contested.
As well as this I think that we need to move away from the parent-child attitude to knowledge and agency which our overly hierarchical society has embodied and start giving credit to each and every person as an agent of their own learning. This is important to me because of the failures of understanding which I have met with growing up with labels which people did not understand, so because they had read a book or recieved training, they negated to ask me about my experience of the world or label.
by Alex Dunedin