The Right to Responsibility

It is a commonplace notion that each right a person has within a community comes with a responsibility to that community also. What happens when a person is denied the opportunity to fulfil that responsibility? Why would a person be denied that responsibility?

Understanding this odd notion is crucial to appreciating an important element in the process of Othering that excludes certain people, notably those designated as other in terms of their ‘mental’ humanness. This fuzzy informal category may be fuzzy and informal but it is nonetheless very real and includes those regarded as having mental illness, intellectual incapacity, and a third awkward grouping that does not fit into either of the other two categories – despite many efforts to wedge them in – and which currently comes under the broad heading of Neurodivergence.

Simply put, Neurodivergence means ‘thinking differently’ but it is a little more nuanced than that. Adding a bit more detail, the ‘neuro-‘ part refers to neurology. As such, it deals with not just thinking but neurological systems. Often this is taken to be a fancy way to mean ‘the brain’ but it encompasses the whole central nervous system (CNS) – including the brain and spinal cord – and also the autonomic nervous system (ANS) which manages the balancing of bodily processes to achieve homeostasis or, when required, will boost or suppress a function or process in response to environmental triggers. Examples are suppression of digestive processes in response to stress, or contraction of pupils in response to bright light. Neurology also includes a third system, the peripheral nervous system (PNS). This includes all our external senses such as vision and hearing.

All three work together. They operate differently and carry out different functions but changes to one of necessity result in changes to the others. We can see the interplay by taking a simple example. Leaving a well-shaded house on a bright summer day a sudden rise in light intensity detected by the PNS results in the ANS causing a contraction of pupils to reduce the amount of light received, and as this is clearly not a single short burst of light the CNS may also be engaged to make a decision about shielding the eyes, resulting in signals to tilt the head downwards a little and raise a hand to block direct sunlight for a short time while the eyes adjust.

Change how any one of these elements operates and how the others respond is affected. If the ANS is calibrated to give a wider resting pupil diameter or responds more slowly to sudden changes in light intensity a whole range of consequences arise. The person may learn that avoiding bright lights and direct summer sunlight should be anticipated and avoided, they may choose to have sunglasses always easily to hand or wear a peaked hat. Failing such solutions, the response to sudden bright light will appear exaggerated to others who are less affected – wincing or making an upset sound in response to the transition, closing the eyes completely for fifteen or thirty seconds, suddenly slowing pace, and so on. If questioned regarding their apparently overexaggerated reaction to bright light, our subject here may express irritation – the experience may so unpleasant and debilitating that unwanted questions only compound the situation.

Clearly to someone who adjusts to bright light more rapidly our subject’s actions seem overblown and unnecessary. The mix of responses they see resulting from activity of the CNS and ANS to protect the eyes, minimise discomfort, return to a point where vision can be used effectively, or express frustration and discomfort do not make sense. They, too, are experiencing the same bright sunlight and have found none of this to be a necessary response. More than that, they have years of experience with other humans in the same situation who also do not react in this apparently exaggerated way. It is not unreasonable to deduce that our subject ‘has something wrong with them.’

Let’s follow that story a little further. Our subject responds to bright light in this way, and has done so throughout their life. They have come to not just expect the unpleasantness of sudden bright light but have found ways to mitigate the effect such as carrying sunglasses. They are also aware of the ways others view their reaction to bright light and have chosen to suppress their response somewhat to limit unwanted questions. The prefer places with dimmer light or where transitions from dark to light and back can be more easily managed. At home, they use indirect lighting, and dimmer lights, and often can be seen watching TV through almost closed eyes. They brightly lit shops, avoid shopping at night and sun holidays. At work they can often be seen wearing a baseball cap at their desk, and though they have a car they avoid night driving, especially on motorways or unlit country roads.

All the above details are the result of a lifetime of trial and error, many hours of planning and decisions around how to go to – or avoid going to – certain places or achieving certain goals. Our subject is an expert on avoiding and dealing with bright light and sudden dark-light-dark transitions. They enjoy woodlands and twilight in ways that few others can appreciate, have exceptional night vision and peripheral vision.

Aside from appearing a bit of a freak at times when caught out by light transitions this dramatic neurological divergence from the human norm goes mostly unnoticed by others. However, this has come at the cost of opportunities missed, time spent in distress or perhaps embarrassment, and in planning which others never see. It also means our subject uses visual data in different ways to their peers, favouring certain kinds of information, having access to information others do not notice, being required to look away from sights others experience directly. The mental picture of the world they hold in their head is not the same as others around them hold. It is filled with details, favours different types of environment, flags up risks that others do not need to worry about. What the world looks like is different, and that picture of the world arises from birth – and perhaps before – through the complex interplay of their peripheral, central and autonomic nervous systems. It centres on their vision but includes a preference for auditory cues over visual, greater attention to forward planning, a subtly more acute sense of touch, a slightly raised pain threshold, a slightly raised baseline of stress, and so on.

I can speak in detail about this person because I am speaking about myself. I know that my experience is different from most others around me, and that occasionally I will encounter others who are more strongly affected by similar phenomena, or who have developed less effective mitigation techniques. I am also aware of others who are affected in similar ways by auditory, olfactory, tactile etc. phenomena. Unlike most humans, subtle signs make such people more obvious to me than they will be to most people, and vice versa. We spot each other while passing through the ‘tunnel of hell’ known as Duty Free at airports, or while seeking out poorly lit corners on train platforms. We notice each other reach for sunglasses while entering a shopping mall rather than while leaving, carrying noise cancelling headphones around the neck, wearing peaked caps, wincing apparently at nothing in a crowded street, squinting in the cinema lobby, sitting outside a noisy café on a cold day.

While all this makes for a different way of approaching daily life and a different worldview, it can also carry real disadvantages that result in the deliberate othering of neurodivergent people.

When your pupils are wider than most people, you get suspected of being on drugs. When you enter offices or peoples’ homes with a frown and your head cast down, you get suspected of being angry or unhappy. When you squint or close your eyes during a meeting or job interview, you can be suspected of being nervous or not fully honest. These are real situations with real consequences. They can lead to missed promotions or poor work reviews, they can cause people to avoid inviting you to events or chatting with you, they can get you arrested and they can prompt certain people to do violence to you.

Why does that happen?

The answer to that, on one level, is the world ‘normal.’ There are other answers but they will be addressed elsewhere.

Based on an original from Wikimedia. Bell-curve chart showing Standard Normal Distribution. On a light yellow background, the central area under the curve is green representing the first standard deviation from the norm; to left and right of this are areas in blue defining the second standard deviation, and beyond these small areas in red representing the third standard deviation. The percentage of the whole each standard deviation includes is indicated as percentages associated with each area.

The chart above shows what is called a normal distribution. It is a way of charting what turns out to be a close approximation of the spread of results from testing a group of similar things. It is, for example, a way to show the range of heights in a population of people of similar age. The more people you include, the more the results tend to align to a smoother and smoother approximation to this ideal perfect curve. Because there are a lot of humans and we have gained the habit of measuring more and more details of human characteristics, distribution curves like this are used in many fields of research.

There are a few parts to this chart worth looking at. Firstly, there is the middle line, the norm. When we talk about things being ‘normal’ this is what we are referring to – things that are at or near enough to that centre line as to make little or no practical difference. Most of any population will typically end up ‘normal’ in this sense. We have ways to measure how close to that normal line an individual is, and have carved up the results into standard chunks based on whether they lie inside or outside a certain degree of deviation from the ideal normal position. Those threshold lines are called Standard Deviations (SD) and are positioned at evenly-spaced points along the base line. They divide up the results and we find in this Standard Normal Distribution that the percentage of results that fall inside the first standard deviation (the green section) totals 68.2%. That means more than two-thirds of this population are regarded as being pretty close to where we would expect them to be, based on the position of the norm. Actually it works the other way around – the position of that norm and the reach of the first SD are the result of testing data, not the other way around.

Having accounted for more than 2/3 of the population we already can now say that a large majority are ‘normal’ or so close as to make little real difference. The second SD (the blue sections) carves off another 27.2%. We cannot treat them as even approximately ‘normal’, they are not part of the majority 68.2%. However, they are not total outliers. Let’s call them ‘quirky’. Now within the normal and quirky groups we have accounted for 95.4% of this population, leaving just 4.6%. A real minority of extreme cases. Whatever it was we were measuring, be it IQ, how far you can throw an orange, how many kings of France you can name, how tall you are, or how sensitive you are to rapid transitions from dark to light conditions, there is no doubt that you are a real outlier. In any group of 100 people we expect to find only four or five people like you.

Throwing oranges a long way is really not a characteristic that plays a major role in daily life. However, if your ability to function effectively in the workplace for example requires that you are not subjected to glaring artificial light, or fluorescent lighting, or blue-toned light, particularly in workplaces where many individuals share a common space, seeking what we call accommodations can be problematic. Failure to persuade an employer to provide those accommodations can mean negatively impacted performance, increased absence due to stress, migraines, or losing a much-needed source of income when you are forced to give notice, or are, as it is called, ‘managed out of the organisation.’

Numerous parallel examples could be provided that highlight issues accessing shopping areas, driving, using public transport, performing at school or college, accessing social events at concerts, pubs, cafés, theatres, hotels, festivals and so on. The nature of the sensitivity may not be vision either, but hearing or smell or other senses.

What matters here is not the nature of the neurological difference but that it lies well beyond the range of experiences of the great majority of the population, outside that second standard deviation marker, and that it places constraints on a person’s ability to carry on what we have reason to regard as normal everyday activities.

Much has been written about this issue. The surface has even been scratched, with legislation requiring, for example, employers to implement a frustratingly vague thing called ‘reasonable accommodations’ when required. There are also other faint scratches – an hour twice a week at a supermarket at otherwise quiet periods when noise and light levels are reduced – but such efforts serve as much to highlight just how inaccessible this modern world remains. Two hours a week will represent less than 2% of the opening hours of many supermarkets. The other 98% of the time the store remains a hostile environment.

There is therefore some reason to view such initiatives with scepticism. The supermarket chain that proudly applauds itself for its accommodating policies is, in truth, seeking to secure the revenue from a minority while at the same time channelling that minority into specific timeslots. This is a form of ghettoization, and it needs to be viewed as such.

But that is not the purpose of this piece. It merely sets out a context.

Effective no-go areas in public space that are hostile to one or more minorities have been challenged and to some extent addressed – braille signage, installation of lifts and ramps, accessible toilet facilities are familiar example. However, it is easier to recognise and address the needs of individuals who are identifiably disabled by steps, narrow doorways or non-tactile signage. In the main, accommodations to address those needs are additions to what is already in place to facilitate the majority of the population. Braille on a sign does not impair a sighted person’s ability to read the printed version, and a ramp does not prevent people from using steps – or indeed walking up the ramp.

However, when an accommodation involves changing the level of lighting in a shared office space, the ambient temperature, or prevents staff from wearing perfumes, the situation changes. It is not only the building owner or the business that is being asked to make adjustments (and carry the costs this potentially entails). Other users of the space are now required to work or shop or live or study in an environment that has changed for everyone.

In reality, the change may actually turn out to impact those others minimally nor not at all. The changes may even turn out to save a business lighting costs and provide a more comfortable workplace for all staff. But arguing for that is not in any way a simple task. This is compounded further by the invisibility of the disability the person seeking accommodations has in that environment.

This situation not only disables the individual when accessing a workplace or school or retail outlet. It impairs their ability to advocate for change more generally. The great majority are asked as an act of faith to accept a tiny minority are disadvantaged by experiences that they cannot even detect, accept that this undetectable need has a real impact on the ability of a handful of people to carry on their normal daily activities, accept that everyone else should accept changes in their lives as a result. The argument that they will not be negatively impacted by those changes is unprovable without actually implementing the change. It is not hard to appreciate how quickly such an advocate can be shifted into the Troublemaker category. When that person is identified as a member of a group associated by many with emotional outbursts, inexplicable behaviour, intellectual incapacity, or aggression for example, regardless of how inaccurate those ideas may be, their ability to effect any change is even further limited.

This is essentially an invisible disability hidden within a hidden disability hidden within an invisible disability. This is what happens when an Autistic person is unable to advocate for accommodations, because they face not just the obstacle of making contact and citing equality legislation. In order to advocate for themselves or another, or indeed for a group of people, they must first overcome barriers that make accessing an environment problematic, then overcome preconceptions about their value as a member, student or employee, then deftly bypass assumptions about the credibility of ‘people like that’, then frame their needs in a credible way without being in a position to present tangible evidence, find a way to define their needs as ‘reasonable accommodations’, and having achieved this then overcome the inevitable negative response from the 94-95% of other shoppers, students or staff for whom the change represents an inexplicable, unwanted and potentially irritating change.

Each of us, as citizens, is afforded rights within the community that are designed to enable us to carry on our lives freely, safely and without harm. Where those rights are restricted we, as citizens, have a duty to push back, not just for ourselves but for all. That duty is also a right. It is a freedom to advocate, to act for the common weal. The value of an individual’s contribution to the community is greatly enhanced by such efforts and this is widely acknowledged by our peers. When a person is prevented, through environmental factors, or assumptions about credibility or capacity, from performing that duty, their contribution to the community is limited, their perceived value to society as a whole is limited, and in a feedback cycle, they are seen as a troublemaker to be opposed rather than as an advocate. That cycle closes open doors, shuts ears, withdraws opportunities, limits access to places of power and social contact. Those who do not fulfil their duties do not deserve their rights.

Othering is a complex, subtle process. It goes far beyond blatant acts of exclusion or discrimination. It is not just about shouting insults at the ‘thick kid,’ or not recruiting someone from an ethnic minority, it is about a society the very fabric of which is constructed not just for the advantage of the advantaged but for the disadvantage of the disadvantaged.


___________________________________________________________

These words were brought to you with the assistance of:

UB40, Signing Off, 1980
Tom Waits, The Heart of Saturday Night, 1974
Tom Waits, Swordfishtrombones, 1983
Tom Waits, Heartattack and Vine, 1980
Tom Waits, Nighthawks at the Diner, 1975

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