Neurodiversity at work: a social model

Submitted by Zac Muddle on 27 November, 2019 - 6:29 Author: Janine Booth
neurodiversity

Fatima’s autism makes her hypersensitive to bright lights, so she can’t work in our office, poor thing.

Or: The bright lights in our office make Fatima distressed as she is autistic and unusually sensitive to light. She can work here if we turn them down.

Ed’s dyspraxia makes him so clumsy that he is a danger at work.

Or: The workplace is arranged in a way that is dangerous to Ed, who is dyspraxic, and to other workers.

Faryal is dyscalculic and cannot be trusted with people’s money, so she cannot possibly work in the finance department.

Or: Some ways of working in the finance department might present problems to a dyscalculic person such as Faryal; we can identify and reduce these barriers.

I feel sorry for Nia because her dyslexia means that she can’t write reports so she can’t do a supervisor’s job.

Or: The requirement that all reports must be written unaided by the supervisor is creating a barrier to Nia and other dyslexic workers. She can do the supervisor’s job if she is allowed to present reports in other formats or is provided with assistive technology.

Femi fidgets and disturbs people. If they can’t cure his ADHD then they will have to sedate him or keep him away from the rest of us.

Or: The way that work is organised here may be causing problems to Femi, who has ADHD, for example providing breaks too infrequently. And it may be that workers are placed too close to each other so are disturbed more than necessary. If we identify the problems, we can remove or reduce them. In the meantime, we would like his co-workers to be more tolerant and supportive of Femi and value the contribution he makes.

Maria’s Obsessive-Compulsive Disorder (OCD) makes her carry out ridiculous rituals.

Or: Maria, who has OCD, has routines that help her to regulate herself at work. This is not necessarily a problem unless undue stress in the workplace makes it a problem or her routines are disrupted.

Henry suffers from autism so he has no social skills and does not fit in at work.

Or: Different people interact in different ways, so an inflexible requirement to “fit in” with the prevailing social culture can present barriers to autistic workers such as Henry, who needs to be recognised for what he can bring to the job.

The first statement in each pair takes a medical model approach to neurodivergence in the workplace. The second statement takes a social model approach. Both statements describe the same situation, but they describe it from a radically different perspective. What changed between the first and the second sentences?

The first statements start with the condition — the second statements start with the social or environmental barrier.

The second statements tell how the barrier, rather than the condition, causes problems.

The first statements focus on what people “can’t” do; the second on what they can do.

The second statements have replaced or removed patronising or disabling language: they show solidarity not pity or contempt.

The social model approach is more progressive, more realistic, and much more useful for achieving change that will benefit both the worker concerned and workers in general. The trade union and the disabled people’s movements support the social model.

A new model

In the 1970s, disabled people organised a new, radical movement of their own. It focused on the demand for independent living, and soon realised that to win this fight, it needed to challenge the whole way in which society viewed disability. It labelled the traditional way of viewing disability as the “medical (or individual) model”, and its new way as the “social model”.

The medical model, it said, saw disabled people as broken, as having something wrong with them, and that it was this broken thing that caused all their problems, that disabled them. They needed to be fixed, or failing that, to be pitied or to be carried as a burden by society.

The social model, by contrast, distinguished impairment from disability. The impairment is the person’s shortfall in functioning, their medical condition. Their disability is the obstruction put in their way by society. It is society which disables people with an impairment.

A simple example: a blind person wishes to read a book at the local library, but cannot find a book that she can read. The medical model says that she can’t read a book because she is blind, that her blindness is her disability. The social model says that blindness is her impairment, and that her disability is the failure of the library to provide books in audio or Braille formats for her to read.

The medical model says that there is something wrong with the blind person; the social model says that there is something wrong with the library. The medical model offers only a future cure for blindness as a solution; the social model offers removal of the disabling barrier by getting the library to stock Braille and audio books.

So far, so good; but in real life, not all examples are that simple.

If the social model were that simplistic, it would not work in a lot of situations. Disabled people with life-limiting illnesses, and those in constant pain, have been among those arguing that it needs to stress that disablement can be caused by their impairments as well as by society, and in most cases by the two in conjunction with each other.

The United Nations Convention on the Rights of Persons with Disabilities, a document written with the involvement of disabled people’s organisations and with substantial social-model content, acknowledges “that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.

Neurodivergence and the social model

For neurodivergence, we may need to consider a further tweak to the basic social model of disability. Our neurodivergence is not necessarily an impairment, and yet we are still disabled. How so?

Let’s look at the opposite first: it is possible to have an impairment but not be disabled. For example, a person who is short-sighted and has this readily corrected by spectacles is not disabled under UK law. They have an impairment, but social provision has removed the disability.

In another example, if you had an impairment that made you incapable of doing something you never needed or wanted to do anyway (for example, pronounce certain words in a language you will never have occasion to speak), then you would not be disabled.

It is also possible to be disabled but not to have an impairment. This would be the case if something about you is sufficiently different from the “norm” that society causes you problems.

Left-handedness is a neurological variant. Arguably, a society which does not provide any equipment (e.g. scissors, guitars, etc) in left-handed versions, and which seeks to force left-handed people to write with their right hands, disables left-handed people. Lefties living in such a society could be considered disabled — not simply mistreated, but prevented from functioning to their full ability. In a society which accepts and facilitates left-handedness, few people would argue that lefties are disabled.

Take dyslexia, for example

The point at which a dyslexic person becomes disabled is at the interface between their brain and the specific form of language used by the society in which they are communicating.

There appear to be significant differences in rates of dyslexia in different languages. For example, it is less prevalent in languages (eg. Finnish) where there is a more direct link between the spelling of words and their sounds, and more prevalent in languages (such as English) where that link is more obscure or complex. This is called shallow and deep orthography, respectively.

There is no biological test for dyslexia. Diagnosis is primarily on the basis of assessment of reading. Diagnosticians do not look at your brain, they look at your performance in a social function (reading), at the way that your brain interacts with written text. Languages developed (and continue to develop) socially, so reading is the interaction between a person’s brain (and eyes) and a socially-constructed written code.

Alan was born to English parents who brought him up in Japan as a fluent speaker of both languages. He was severely dyslexic in English, and not dyslexic at all in Japanese. To put it another way, he was disabled in English but not in Japanese. It may be that his brain has a deficit in its ability to translate phonemes, which the English language relies on but Japanese does not. Maybe that counts as an impairment. But his disability arises at the point of contact between his brain and a particular social form (phoneme-reliant written language).

So, a traditional or medical model of dyslexia would say that it is a disability that impairs a person’s ability to read. A social model of dyslexia would say that it is a neurological variant which is better suited to some forms of written language than others, and therefore that it is those written languages that disable the dyslexic person.

Not medical

An interlocutor tweeted in an argument with me words to the effect that: “The social model says that if an epileptic person had adjustments at work, then they would not have epilepsy any more.” No: the social model would say that if an epileptic person had adjustments at work, then they might be a little less disabled; they wouldn’t be any less epileptic.

The social model does not claim that there is no medical element to disability, nor that a person’s impairment or condition does not cause them any problems.

The social model does not claim that all impairments are caused by social factors (although this is true in some cases e.g. industrial injuries).

The social model does not rule out medical interventions. On the contrary, the social model would argue that failure to provide helpful medical interventions is one of the barriers that society puts in the way of some disabled people.

A social model of neurodiversity?

I want to argue for a social model of neurodiversity that understands that neurodivergent people are in the majority of cases disabled: some because their neurodivergence is an impairment and because society, in conjunction with that impairment, creates barriers to their equal and independent participation in society; and some because although their neurodivergence is not an impairment, they are nonetheless disabled by a society that does not tolerate or accommodate their divergence from the “norm”.

For some people, their neurodivergence may be part impairment, part difference. This model would work for them too. Indeed, part of the point of it is to consider impairment irrelevant to the basic case for rights and equality. The degree to which a person’s neurodivergence is impairment or difference will have a significant effect on their choice of interventions — medical, therapeutic or other — and on the way they wish society to view their condition. But it does not affect their humanity, their right to equality and dignity.

The social model is a materialist approach: it roots our experiences of disablement in social structure and in our interactions with people and environments.

People often ask whether autism (or another neurodivergent condition) is a disability. I’d argue that it is more helpful to ask whether autistic people are disabled (to which my answer would be: in most cases, yes). It may seem a semantic distinction, but it is important: it locates the disablement not in the autistic person’s brain, but in the society they live in and the way the individual and society interact. Autism is not our disability: it may be an impairment, a difference, or some combination. Our disability is the difficulty that arises in our interaction with the specific society in which we live.

An effective social model of neurodiversity has the potential to unite neurodivergent people through understanding disability as distinct from impairment. Recognising that neurodivergence may or may not constitute impairment is not a moral judgement or the establishment of a hierarchy.

Quite the opposite: it is an approach that promotes unity.

This website uses cookies, you can find out more and set your preferences here.
By continuing to use this website, you agree to our Privacy Policy and Terms & Conditions.