A while ago, I described my view of what the neurodiversity paradigm means.  In that post, my ideas owe some very clear debts not only to others who have thought about the concept of neurodiversity, but also to the thinkers who developed the social model of disability.

Indeed, in Judy Singer’s new introduction to the original thesis (1998/2016) which she used to propose the idea of neurodiversity, she credits the social model with providing the “framework” of the thesis.  However, Singer also notes that the social model had “cultish, fundamentalist tendencies” that seemed to dismiss insights from medicine and science.  Therefore, the thesis argues that “neither social constructivism nor biological determinism” was “adequate” for autistic people.  Thus, Singer views neurodiversity as related to the social model, but distinct from it – and that is my own view as well.

The Social Model: A Step Too Far

The social model of disability emerged thanks to the efforts of disability advocates in the United Kingdom – or more specifically, the efforts of advocates with physical disabilities.  Essentially, it distinguishes between impairment, the biological differences between people with disabilities and able-bodied people, and disability, which refers to barriers or disadvantages created by society.  The model implies that physically-impaired person would not be disabled if provided with a wheelchair in a world where all the infrastructure to promote physical accessibility exists (including wheelchair ramps, accessible doors, accessible washrooms, etc.),[1] and if the impaired person experienced no negative or stigmatizing judgements from others.  The person has an impairment, but the disability arises from society.  This is expressed in the following paragraph of the Fundamental Principles of Disability (1976):

“ ‘…In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society.’ To understand this it is necessary to grasp the distinction between the physical impairment and the social situation, called ‘disability’, of people with such impairment. Thus we define impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression.”

This model was undoubtedly of tremendous value to those who developed it, but it perhaps exists more as a political tool than a scholarly attempt to understand reality.  Indeed, Mike Oliver (2013), one of the leading figures in the history of the social model, claims that he sees it as nothing “more than a tool to improve people’s lives.”  The social model aimed to shift the focus away from physical impairments and towards the societal responses to impairment, because eliminating societal barriers is often a far more effective approach to improving the lives of people with physical disabilities than attempting to eliminate their physical impairments themselves.

Nevertheless, the developers of the social model chose to advertise it as a “model” of disability, not a political tool.  This has led to it being treated as a model, and to its claims being taken as nothing less than factual claims about the state of the world.  More than that, just as Singer notes, the social model developed a “fundamentalist” character.  It became an ideology and an orthodoxy.  Shakespeare and Watson (2001, p. 11) harshly warn that the social model took on the characteristics of a “sacred cow,” and disability activists faced pressure from their peers to accept its tenets as a “creed.”[2]  Approaches that deviated from the social model were criticized simply for deviating from the social model.

Yet for people with physical disabilities, impairment is very real, and sometimes deserves attention.  Should we not even attempt rehabilitation after injuries?  Obviously, we should.  Or, as Shakespeare and Watson propose in jest (2001, p. 16), should we stop trying to avoid the creation of new impairments and forget about road safety, gun control, and the like?  Obviously, we shouldn’t.  Unfortunately, by taking the radical position that all disability emerges from society, the social model made itself all too easily refutable, and one might even argue that adherence to the social model arguably risked becoming more a liability to advocates than an asset.  Thus, in some contexts, the social model’s single-minded focus on social construction to the exclusion of biology is not helpful.  The social model took us a step too far in the direction of social constructivism.

Fortunately, the term “neurodiversity” has evolved in such a way that we can now draw a clear distinction between the neurodiversity movement and the neurodiversity paradigm (Walker, 2014).  Thus, unlike physically-impaired advocates torn between using the social model as a political tool and as a world-defining paradigm, we should, if we are careful, be able to keep the two meanings of neurodiversity separate.  The neurodiversity paradigm is an attempt to understand the world; the neurodiversity movement is a social and political movement which campaigns to end the marginalization and oppression of neurodivergent people by shifting attention away from the negative aspects of neurodivergences and towards their positives, and, even more importantly, away from neurodivergences themselves and towards the social contexts that turn neurodivergence into disability.

Adherents to the neurodiversity paradigm have always made it clear that we do not commit ourselves to an extremist denial of neurobiological reality and an exclusive focus on processes of social construction.  Nor do we oppose interventions to address differences within the individual.  Besides Singer’s denunciation of the “fundamentalist tendencies” of the social model, we can cite comments from Ne’eman (2010):

“Does this mean that we should not be engaged in trying to ameliorate the many challenges associated with being autistic? Of course not. What it does mean is that, first, we should target our efforts towards the real challenges we face, rather than towards a broader, nebulous concept of ‘curing’ autism that is offensive to many of the people that it aims to benefit. Second, we should in every instance consider the fact that it is often social barriers rather than disability itself that pose the problems we face. When a person faces anxiety, let us look for a method to address that challenge — but while the answer may end up being a medication or other medical solution, for many facing this challenge, social rather than medical approaches may be more effective.”

Here, Ne’eman is certainly arguing in favour of a greater focus on the social context, but he quite clearly stops short of refusing any intervention to change the person.  I could cite similar words from other autistic people.

My own take on the neurodiversity paradigm is no exception.

While I am influenced by the social model when I emphasize the importance of considering whether an intervention to change the physical or social context of the person might be more useful and less damaging than attempting to change the person, I believe there are many cases in which an intervention to change the person will be the correct approach, and I stated as much.

Likewise, while one can find a strong influence from the social model in my decision to locate “disability” within the interaction of the individual and society, I quite deliberately chose not to locate disability within society alone as per the dictates of the social model.  I do believe that the characteristics of the individual have an important role to play in disability, and there may be cases in which one would have to think very, very hard in order to come up with a society in which a given difference was not disabling.[3]

The Language of Impairment

Another distinction between the social model and the neurodiversity paradigm as I sketched it is in the language of impairment and difference.  The social model was, as noted earlier, developed originally by and for people with physical disabilities.  In this context, describing the actual differences between disabled people and able people as “impairments” made some sense.  Outside this context, it makes less sense.

Consider the example of the Deaf community.  From the perspective of a Deaf person, deafness is not an impairment.  Yes, Deaf people cannot hear or easily communicate through spoken language, but it is equally true that most hearing people (including, I confess, myself) are utterly ignorant of any sign languages.  If you put me into a group of Deaf people, I would be utterly unable to follow what was being discussed, and would be reduced to communicating by frantically scribbling or typing – an inefficient approach.  Who is impaired, exactly?

The notion of impairment also fails to work well with many neurotypes.  Clearly, if someone is unable to communicate through any method (neither sign language, nor spoken language, nor any form of AAC, including typing), then they are impaired.  But what if their “impairment” is an unusually intense interest in some given area?  How is having special knowledge an impairment?  Indeed, we might argue that many mental differences can be a strength or a weakness, depending on the context: the inattentional aspects of ADHD that are so disabling in the classroom might be an asset in a setting that demands spontaneity, while the autistic honesty that can be so disabling in a world of dissemblers might be an asset in a truly moral world.[4]

Thus, the terminology of impairment is unsuited to any theory which claims to be either a general theory of disability, or a specific theory of neurodivergent disability.  As such, and in keeping with the idea of “neurodiversity” itself, I simply use terms like “difference,” “variation,” or “neurodivergence” to describe what the social model would call “impairment.”

Footnotes

[1] Well, at least if this infrastructure was so effective as to pose no special inconvenience to the impaired person in the performance of any task.  Unlikely to be true in practice, I admit, but we are discussing theory here.

[2] The autistic community has its own sacred cows.  Thankfully, these do not yet include adherence to a dogmatically narrow model of neurodiversity, perhaps because the concept remains amorphous, so advocates are free to profess allegiance to “neurodiversity” and interpret as they see fit.  However, many autistic communities openly require all their members to denounce the evils of “ABA,” or at least refrain from supporting it, which I believe is very unfortunate.

[3] Take, for example, a lack of any communication.  AAC and sign language have their uses, but if an individual has neither spoken language, nor AAC, nor sign, then it is very hard to imagine a society in which they are not disabled.

On the other hand, it is equally true that there are cases when it is hard to imagine how a given disability is not created by society.  Women are biologically different from men, and women in some Islamic theocracies are disabled because their position in society is clearly inferior to that of men, but this obviously has much more to do with the social context around these women, such as the existence of legislation that places women under the “guardianship” of husbands and male relatives, than the biological differences between men and women.

[4] Kant, the great philosopher who came up with the idea of a categorical imperative that forbids lying under any circumstance, may have been autistic.  Indeed, Kant and Bentham, the great figures of deontologism and utilitarianism, the foundations for much of modern moral philosophy, might both have been autistic.

References

Ne’eman, A. (2010). The future (and the past) of autism advocacy, or why the ASA’s magazine, The Advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30(1). https://doi.org/10.18061/dsq.v30i1.1059

Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773

Singer, J. (2016). NeuroDiversity: The birth of an idea. Kindle edition. Original work published 1998

Shakespeare, T., & Watson, N. (2001). The social model of disability: An outdated ideology? In S. N. Barnartt & B. M. Altman (Eds.), Exploring theories and expanding methodologies: Where we are and where we need to go (pp. 9–28). Emerald Group. http://dx.doi.org/10.1016/S1479-3547(01)80017-8

Walker, N. (2014, September 27). Neurodiversity: Some basic terms and definitions. Neurocosmopolitanism. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/