What does NeuroDiversity mean?

I'm discovering that the word Neurodiversity, whose meaning seems intuitively obvious to me, is actually quite complex to unpack. This is my second attempt at simplifying the concept. Sadly, it is now more complicated than my first, which you can see below it. 

Second Attempt

NeuroDiversity 

is a subset of Biodiversity.

It encompasses all sentient beings, but let's keep it simple and confine it to humans.

Diversity is a property of populations NOT individuals.

Neurodiversity is NOT a synonym for neurological disability, divergence or difference.

Neurodiverse is not a synonym for "disabled". We are all neurodiverse because no two minds are exactly alike.

I have come to prefer the term NeuroMinorities for those with atypical cognition.

The NeuroDiversity Movement

is an evolving, decentralized and leaderless social movement.

It was developed by and for marginalized neurominorities, with the involvement of their allies.

It has so far mostly been adopted in the "West".

Its consensual aims are to: 

  • shift mainstream perceptions of marginalized neurominorities 
  • replace negative, deficit-based stereotypes of neurominorities with a more balanced valuation of their gifts and needs
  • find valued roles for neurologically marginalized people
  • show that all society benefits from the incorporation of neurominorities
The NeuroDiversity Movement is made up of everyone who uses the word. - even those who are against it, whether they like it or not. To understand why, check out Richard Dawkins' original meme theory.

Critiques of the Neurodiversity Movement

To understand the critiques, you need to familiarize yourself with the Social and Medical Models of Disability.

Critics of the Neurodiversity Movement react against what they perceive to be a social constructionist fundamentalism which seeks to banish the reality of serious disability.

Fundamentalism and reaction inevitably arises wherever new ideas emerge.

How pervasive these extremes are have not been researched as far as I know. 

Social movements tend to polarize into opposing extremes and every ideology inevitably attracts its antithesis

Extreme voices define the boundaries of the movement, but they are not "The" Movement.

My position

My concept was rooted in the social constructionist model,  but I soon became impatient with what I called the model's almost Creationist attitude to biological and medical science. This is recorded in the reprint of my thesis, Neurodiversity: the birth of an idea  (Paperback version, Page 13)

I sought a synthesis of the best of the social constructionist model and of medical science, but found them insufficient to describe the new paradigm of the autistic spectrum. I was also drawn to "ethnicity model" based on the Deaf Movement, who claimed they were not disabled but a linguistic sub-group, or what I would now call a "minority"

I regret that some in the Neurodiversity Movement now align themselves with an extreme social constructionist view. Especially as many of its original proponents have moved well beyond the originally helpful but ultimately simplistic dichotomy. For a comprehensive review see Tom Shakespeare on "The Social Model of Disability" 

I regret that some wish to expunge words like "mild/moderate/severe" and "disability" from the English lexicon. This kind of silencing can only backfire on the whole movement, as it necessarily engenders an equal and opposite backlash from those who consider themselves to be severely disabled. 

I regret that so many people in the movement have anti-parent attitudes. Yes, some parents have been misinformed, some parents are not well suited for the roles of parenting, but the vast majority know their children's needs best, and are always striving to broaden their understanding. 

And diversity is about respecting choice. Whether someone wants a cure, or does not, is their choice. It used to be said that people couldn't make informed choices because all they got was the negative pathological explanations. Thanks to the Neurodiversity Movement, there is enough information out there now to make informed choices possible. 

I am appalled by the extremist from both sides that I have encountered on social media, which gives an equal voice to everyone no matter how ignorant they are. I don't know whether to laugh or cry at being painted both a Communist and a Neo-Nazi by these warring factions. 

I am overcome with admiration for pioneering human resources CICs (UK) and non-profits who are genuinely committed to creating an inclusive society. But I am worried that they might be over-run by "cowboys" - commercial opportunists who see a gap in the employment market and don't understand the history, the politics or the nuances of the movement. And who will readily shoehorn whoever they can find into the gaps. 

I am worried by how the talk of inclusion will translate into practice in a hyper-competitive Neo-Liberal economic system devoted to squeezing the maximum profit out of individuals for the most limited wages and conditions. 

But I remain hopeful that neurodiversity awareness and the incorporation of neurodivergent people will slow and humanize the accelerating pace of work and benefit all workers. 

And I am proud that the concept of Neurodiversity has so far permeated the culture that attitudes are changing. At gatherings of people who identify as part of the Neurodiversity Movement. including their allies, it's great to see people with diverse conditions coming out of closets, sharing experiences, commonalities, differences, collaborating in creative enterprises and projects , expanding their knowledge and awareness, and, yes, sometimes getting on each other's nerves.

And yes, people with severe, antisocial disabilities and the euphemistically-named "challenging behaviours" are rarely in evidence there. 

But why should this be a zero sum game? Why should they be pitted against each other? Why not be pleased at the progress already made? Why not grow the pie, instead of fighting over the scraps?

First attempt

Diversity is a property of populations within habitats and cannot be applied to individuals. You cannot talk about a diverse animal, but you can talk about a habitat that is a home to diverse species

Biodiversity is a property of life on our planet

Neurodiversity is the subset of biodiversity which properly encompasses all beings with a nervous system, but in current usage refers only to humans.

My concept of neurodiversity was based on a generally accepted principle of biodiversity: that the most stable environments are those that are most diverse and that every species is of intrinsic value and has a necessary part to play in the whole

Neurodiversity is simply an undeniable fact about our planet.
It is not something you can be “for” or “against”!

Neurodiversity has nothing to the say about good versus bad.

It does not classify people.

Nor does it imply that it is good or bad to group and classify people.

That is a job for culture, for the evolution of law, medicine, art, philosophy, literature etc ... Enough said.

A Neurodiversity Movement as I imagined it 
... was not to be confined to Autism.

It was to be an umbrella movement for any "neurotribes" who had been stigmatized for having kinds of mind-bodies that were different from the largely imaginary normal

I saw that the idea that "every species has value and right to exist" could be used to legitimate a civil rights movement for neurological minorities, because it linked their claims for inclusion and acceptance to an indisputable necessity - that of conserving the diversity of the human species

The Neurodiversity Movement now

There is no "official" Neurodiversity Movement. There is no central authority that defines its meaning.

The "movement" is really a discourse: its meaning continually evolves out of the locus of everything that is said and done about it, whether for or against.

Some people speak as if they were representative of it. But no one elected them or nominated them.

Meanwhile others who disagree with their voices turn against the very idea of Neurodiversity and rage against this imaginary  "Neurodiversity Movement" and its imagined followers.

The reality is that whether you are "For" or "Against" Neurodiversity, you ARE the movement as long as you keep mentioning it.

It will continue to evolve according to the social forces around it.

As I have said before - it seemed to me that it the concept was already "out there" in the Zeitgeist. I happened to be situated at the locus of biological/genetic, historical and geographical forces it "landed" on.




People with Neurodiversity

I notice with some disquiet that the phrase "People With Neurodiversity" is creeping into the language.

This is a misunderstanding and misuse of the term. It turns neurodiversity into a synonym for disability. If used in this way, ND will quickly inherit all the stigma of disability from the old Medical Model.

 ... the term “Neurodiversity” must be kept as an overarching principle
to uphold the necessity and value of neurological minorities


This is not to deny the immense treasure that is medical science. On the contrary it is to balance the problem focus of the medical view with a sociological view that allows neurological minorities, their families and advocates - in situations when they cannot speak for themselves - more scope for self-definition

Neurodiverse or Neurodivergent?

Similarly "neurodiverse" is creeping into the language as an adjective for "disabled"

Neurodiverse as an adjective doesn't make sense, since it can only be applied to the planet as a whole. You cannot single out a neurodiverse continent, nation, city, let alone an individual.

But an individual can diverge from the neurological ideal, which is mistakenly considered to be a norm, and which varies from culture to culture. Some cultures idealize introversion. Ours puts a premium on extroversion. The obvious example: in the West, we think "Good eye-contact" is a sign of character. Other cultures believe eyeballing another is invasive, disrespectful, and controlling. 

Respect for human diversity

Until recently, the sanctity of all human life in our culture was underpinned, however imperfectly, by Judaeo-Christian belief in divine command.

With belief in divine authority waning, we need a convincing new argument for the sanctity of all human lives to counter the inhuman and reductionist logic of economic rationalism which forever teeters over an eugenic abyss

Perhaps the idea of respect for diversity as the foundation of the stability
of our floating global home provides that argument

. . .
I value constructive criticism. This is a work in progress, somewhat like life itself, and my ideas are constantly evolving. If you have constructive suggestions please continue the conversation on Twitter

I cannot guarantee a response
@singer_judy

4 comments:

Christoffer de Graal said...

Horayee, horayee horayee. Thank you Judy, very much, for your clarity, in writing this.

ABSOLUTELY *NO* to Neurodiversity being used as separatist term .. of a new kind of labelling for 'hidden disability', old school medical model.

SO important to keep clarity on this and not that support a subtle but powerful societal and institutional discrimination.

It would be unthinkable to have cultural diversity as a label for non-white people... that would be going backwards.

It is similarly not ok to do this for Neurodiversity. - if Neurodiverisity covers the whole range of human variation - it needs tobe be, clearly, that.

Sharman said...

Thank you for this blog post Judy. I feel I have most likely been using the ND term indiscriminately and perhaps not promoting the clarity which you express here. I first heard the term quoted by DANDA and the late Mary Colley who worked so hard to support adults with a broad range of challenges and liked its inclusiveness. I will continue to enjoy watching the emergence of discussion and dialogue. Best wishes, Sharman

Frazzle said...

Judy
Thank you for clarifying your intent behind the term ‘neurodiversity’, and for driving this agenda.

I have used this term differently because I was introduced to it in a different way, I meant no harm in using it to represent myself and others. Only to show pride that my brain is wired differently.

The issue with words and labels, is that within cultural terms you can not keep them pure, as everyone will see them from a different angle or with different lens. I can understand the frustration being the creator, and I hope I don’t offend, in the same way that other movements have taken a word and used it to identify or unify a group for good. I think this should be celebrated, I belong to a neurotribe, I celebrate my difference as a strength, and I disagree that the term will ever be corrupted to be a negative. As the movement has a real passion to change the discourse for the positive
Jenny

Judy Singer said...

Hi Jenny and Sharman

I have admitted in an article at https://www.geniuswithin.co.uk/blog/theres-a-lot-in-a-name-diversity-vs-divergence/ that I understand that words evolve according to the social forces that play upon them.

So if the words "neurodiversity" and "neurodiverse" fall into popular usage as synonyms for "neurological disability" and "neurologically disabled" but are used to create a better world, who am I to quibble?

I can put my oar in for a nuanced usage, but only time will tell whether "neurodiverse" will go the way of "handicapped", "disabled", "neurologically challenged" and other well-meaning words that soon became tarnished by stigma.

In any case, it is becoming increasingly obvious that I have lost this particular debate, as no better word has come up for "neurodiverse people" as the preferred adjective for people who belong from neurological minorities. "Neurominor people" really doesn't cut it, it does it?