Not All Disabilities are Visible

Who is speaking and to whom? In the above example it could be an airport authority talking to the ‘able traveller’; management of a supermarket talking to its customers, or perhaps railway station management talking to its passengers. The campaign to install hidden disability signage at public places is a response to people with disabilities being refused access to or being confronted as to why they are using an accessible facility. We can agree that there is a growing sensitivity and empathy towards people who ‘suffer’ a disability. A civilised society will demonstrate their values in attitudes towards minority groups. The civilised society perhaps did not appreciate the fight it would have in that honourable quest.

Whether it was the result of complaints by ‘able’ clients about those who, they perceive, do not have a disability, using the accessible facility and, as a consequence, leaving those who do have a disability waiting outside. Or able clients resenting other able clients gaining an unfair advantage, especially if there is a queue at the able facilities - those responsible for this public facility in a public place felt there was a need for some people to be reminded about the nature of disability, fairness and tolerance. 

I am not only talking about those who have a hidden disability but those like Parkinson’s disease where for periods of time you are completely immobile, then rescued by medication that gives you back your mobility, and appear perfectly able, for a short period of time. For people with an invisible disease, or living with the threat of instant paralysis with very little notice, the risk of being confronted, questioned, chastised and even abused, is a very unpleasant experience.

The data tells us it is common: in a recent public survey 93% of people said they would challenge a ‘healthy-looking person’ for using accessible toilets because they believe they are ‘standing up’ for the rights of disabled people or that it is ‘not fair’ for everyone else. On the surface, this does suggest disability rights are in the public consciousness compared with previous decades. At the same time, it reminds the public of the common misconception that ‘real’ disability can be seen, and is determined solely by whether a person uses assistive equipment, requires full-time care, or their gait and movement gives away disability. 

The sign itself uses wheels to denote a place for disability. It seems inappropriate that the universal symbol for disability is still someone using a wheelchair when there is a much smaller proportion of those who have a disability present with visible characteristics than those with a disability but show no signs. The World Health Organisation found that a billion people worldwide live with some kind of disability and one US survey found that 74% of people with disabilities do not use any assistive equipment that might signal an impairment.

I want to look beyond the question of who classifies as ‘disabled enough’ to access certain facilities - which is constantly being negotiated in car parks, on public transport, outside lifts and public toilets - to the underlying issue of how we arrived here in the first place. 

Why Language Matters

Going back in time might offer a clearer picture as to why attitudes are what they are. The phenomena of ‘disability awareness’ implies it is a new concept emerging as a result of increasing numbers of people affected. In reality, of course, disability is ancient and has existed for as long as people have. The human condition has not much changed for the last 20,000 years but our understanding of what (dis)ability means has shifted and is in a constant state of flux. 

In history, the rule was not, necessarily, one of excluding people with disabilities from society and denying them education, care and employment. The Egyptians thought that a child born with a disability had been favoured by the Gods, marked out for special treatment because of your God given difference. However, the vocabulary of the English Medieval able person in describing what we now term as a disability, would be offensive to the contemporary ear.

But to ignore this source would be to deny an insight into Medieval attitudes towards disability. In fact, there was no Medieval equivalent to the term ‘‘disabled’ or disability, which in itself speaks volumes about Medieval mentalities. Rather “blynde”, “dumb” and “lame” were understood to attribute those with physical impairments. Even in more contemporary times, if we look at a census from the first decade of the 19th century, at the end of each row is a box with the rather brutal instruction to tick if a person living at your home was an “idiot”, “imbecile” or “lunatic”. Presumably, the characteristic behaviour associated with each of the above conditions is different to the extent of being able to distinguish its features. Is there any advantage in naming the disability this way, would it not help to understand the ‘difference’ by not placing it under the large ‘disability' umbrella? 

We have apparently moved on from a medieval belief that disability is a punishment from God for the sins of ancestors - or have we? There are many who believe today that when a person is ‘disabled’ to whatever degree, it is a symptom of original sin, when evil came into the world. Sin entered the world as a result of man’s disobedience to God, and that sin brought with it sickness, imperfection, and disease. Overall, disability remains to be seen as a ‘problem’ that the individual is responsible for. There is a legacy of equating disability and health with morality, and the two are still seen as contradicting in terms. The etymology of the word ‘disability’ implies ‘deprivation or loss of power… incapacity in the eyes of the law’. The inherently negative prefix ‘dis-‘ meaning “lack of,” “apart, away” implies a lesser human.

As stated above, during the last half a century, there has been significant progress made to enable disabled people to become ‘active citizens’. Campaigns to change the vocabulary when talking of the ‘less-able’ has marked a shift in attitudes toward disability, such as the adoption of ‘disabled’ over ‘handicapped’ which is now considered derogatory. To preserve dignity, and demonstrate respect to the person with disabilities, we do not refer to them as someone who goes ‘cap-in-hand’ as a beggar.

The more recent preference for ‘people with disabilities’ over ‘disabled people’ identifies a shift in understanding that a disability is something that people have, rather than who they are. This has been termed ‘person-first ideology’, suggesting that disability is merely a secondary feature of one’s identity and refocuses attention from the disability to the person who happens to have it. Language matters because it is integral to how we construct expectations of ourselves and those around us. From an Althusserian perspective, in which individual subjects’ identities are constituted through the process of “hailing” them in social interactions, the meaning of disability is given whenever we speak of it and act upon it.

Beyond social discourse, the infrastructure of our society, the built environment, education and the workplace, still priorities able-ness, sane-ness (as well as white-ness, male-ness, cis-ness) over everything else. The able-bodied, white, cis-man has been misunderstood as the ‘human default’ since theories of human evolution and ‘Man the Hunter’. This ‘normative’ has been valued over that which is ‘other’, and by definition, constantly (re)establishes itself in relation to that which it excludes. 

The potential here, as Social Constructivism shows us, is that however sedimented ‘normatives’ may appear, these constructs are nevertheless produced, maintained and changed through interpretive processes. If the normative is subject to change, it will, in effect, shift the meaning of the ‘abnormal’. On the other hand, as Johanna Hedva points out in ‘Sick Woman Theory’, perhaps the only way to resist the idea that disability and sickness is equated with abnormality is to move beyond the ontological binary of ‘normal’ and ‘abnormal’ altogether.

Capital vs Care

In a Darwinian framework, people with disabilities are less human, they have nothing to offer the gene pool and are a liability to the security of the tribe. Patriarchy is deemed the inevitable ‘natural order’ of things and views (cis-white-able) male dominance as a human universal and a result of nature’s biological design. 

The ongoing resistance against an unequal distribution of power and agency, domination and oppression, does not inevitably include the questioning of Patriarchy. Incremental change, like improving government support services and health care for people with disabilities, will not necessarily lead to acceptance and tolerance in society.

Words such as “crippled” and “retarded” have now gone out of fashion, but is this not just as much a reflection of the modern desire to appear ‘politically correct’, as not wanting to offend people with disabilities? After all, older generations will remind us that most usage of these terms was never intended as insulting - though of course it was.

‘Progressive’ attitudes actually often disguise a more nuanced kind of discrimination. A typical example of this would be a person praising an individual who has a disability for something completely within their capacity. This is patronising for the person with a disability, whilst it feels good for the person praising them. It reaffirms the stereotype that disability means stupid and incapable, as the ‘progressive’ person makes themselves the ‘good guy’ in the story. In a truly tolerant world, there would not be a “feel good factor” to being nice to people with disabilities, because this would simply go without saying.

‘Ableism’, discrimination in favour or able-bodied people, extends beyond language, perpetuated intentionally or not, to education systems, the built environment, medical care and the workplace. The recent “social model” of disability identifies three categories that cause barriers in society for people with disabilities: the environment – including inaccessible buildings and services; people’s attitudes – stereotyping, discrimination and prejudice; organisations – inflexible policies, practices and procedures.

In the UK, the 2010 - 2015 government policy paper on equality encourages the removal of these barriers and reduction of their effects. More generally, there have been efforts to make the workplace more inclusive of people with disabilities. Quota systems for private and public enterprises or institutions exist in the majority of EU countries. Their target is to stimulate labour demand by committing employers to employ a certain share of people with disabilities. The UK is an exception here which abandoned its quota system in 1995, preferring instead to rely on legislation making it generally unlawful to discriminate against people with disabilities in the hiring process and in the employment relationship. Whether it is quotas systems or legislation, however well intentioned and marginally effective they may be, neither will individually solve underlying prejudice in the workplace.

In 2010, the UK’s Equality Act replaced previous anti-discrimination laws with a single Act which embraces “positive action” to improve diversity in the workforce by protecting and including people with disabilities from being treated less favourably. There is a difference between ‘positive action’ which does not negatively impact other groups, and ‘positive discrimination’ which favours someone purely based on a “protected characteristic” - usually to fill a quota. Positive action provisions mean that it is not unlawful to take special measures aimed at alleviating disadvantage or under-representation experienced by those with disabilities. However, as it is entirely voluntary, ingrained bias against disability contributes to that fact that less than 1 in 20 people with disabilities are in paid employment.

Liz Sayce, Chief Executive of Disability Rights UK, has said that the fear of facing discrimination is a significant factor in the under-representation of people with disabilities in the workplace. They explain: “Some disabled people have applied for hundreds of jobs – and only got interviews when they don’t mention their disability... if the company is viewed as non-diverse and inflexible, with no evidence of employing disabled people, the anxiety about whether you will be accepted is magnified.” Unfortunately, skeptics have called positive action “political correctness gone mad”. Predictably, this has gone so far as to provide ammunition for (white-cis-able) right-wing groups, leading to further hostility toward people with disabilities. 

The Equality Act would suggest we are moving in the right direction in the UK, but the evidence actually suggests a reduction in disability benefits has made things worse for people with disabilities in Britain who rely on the support to live. Goodley et al suggest in the age of neoliberalism those possessing disabilities are most at risk, increasingly subjected to “slow death, increased precarity and growing debility.” An increase in state support during the 1990s has since been cut due ‘austerity measures’ - a national campaign of budget cutting which began in 2010 led by the Conservative government.

In 2013, the government introduced a bedroom tax which unfairly penalised people with disabilities for requiring extra beds in other rooms. “Fit for work” assessments supposedly aimed at helping people with disabilities find employment, actually led to a significant reduction in their benefits resulting in a massive increase in mortality within weeks. “PIP” tests, which decide whether people are still eligible for their personal independence allowance because of their disabilities, even retest patients with incurable diseases. Parkinson’s UK complained that approximately a quarter of people living with the disease in Britain had lost all or some of their disability support after benefit reassessments, only to have the payments reinstated on appeal.

In 2019, Frances Ryan wrote for the Guardian: “Anyone who thinks these horrors are an aberration in Britain’s supposed long history of care for disabled people is missing the point. That brief period of gains [in the 90s] aside, the crisis befalling us is so horrendous not because it is new, but precisely because it is not. People forget how recently it was that disabled people were shut away in institutions in Britain, or effectively banned from public transport, schools or jobs.”

The situation is a paradox: there are efforts to move toward equality, which in many ways are proving effective, meanwhile the statistics tell us inequality is on the rise. This appears to be a reactionary situation. What seems like evidence of a more tolerant and learned society, such as the hidden disability sign, potentially comes as a response to an increase in discrimination - however politically correct our terminology. On the one hand language appears absolutely crucial to this issue, and on the other we must acknowledge that a change of words is essentially meaningless unless we interrogate the subtext itself. We are a long way from a medieval mentality toward disability, but state cost-cutting of the last decade (in the UK) has shown us how impermanent “progress” really is. It is evidence that the notion of ‘progress’ as linear, heading toward a just and equal world, is a fantasy and something we should not take for granted. 

My efforts here are not to measure progress in regard to including people with disabilities in society. There are plenty of personal anecdotes available on blogs, forums, social media, in newspapers and magazines, which tell us things are much worse now than we like to imagine - and there are analysts out there proving that this is the case. Rather, I am making the point that for all the good an update in language or signage is doing, it is giving us a false sense of reality. Society may like to believe we are headed toward equality, but the data is showing us that rights can be skewed or all together disappear when we value economic growth over, and at the expense of, those who do not have the guarantee of care.

Theorists have argued that inequality is a direct result of an economic system with a profit-over-people motive. Marta Russell argues that discrimination against disability is embedded in economic structures of exploitation and oppression. Influenced by the Darwinian theory of Natural Selection, Capitalist ideology believes it is natural to exploit the “weak”. Capitalism requires the average worker to produce commodities, and if that worker cannot meet those requirements (due to disability or sickness) they cost more and cut into profit. The contradiction is that whilst capitalism rejects people with disabilities for this reason, the dynamic of profit-over-people is also detrimental to the mental and physical wellbeing of workers, thus causing disability and sickness. 

Karl Marx said that capital takes no account of the health of the worker unless society forces it to do so. This suggests that whilst capitalism is essentially opposed to disability, there is potential to protect the needs of society under capitalism. Logically, discrimination is bad for business; every customer turned away represents a loss of potential profits. In ‘The Theory of Discrimination’, Kennet Arrow discusses how some companies care more about their human biases than profit-maximisation, and that discrimination is a human trait present in socio-economic organisation, not a byproduct. Others argue it is not only a byproduct, but a capitalist necessity. Johanna Hedva has suggested that “to stay alive, capitalism cannot be responsible for our care because its logic of exploitation requires that some of us die.” My aim here is not to take a position either way but point out that the social construction of ‘disability’ is shaped by economic relations which positions capital and care at odds. 

Wellness

To explore further the way Capitalist ideology constructs disability, I want to consider how the notion of ‘getting well’ promotes the discrimination against people with disabilities. If disability and sickness is costly, then ‘wellness’ is cost-effective. In capitalism, a person's value is reflected in their ability to accumulate value. ‘Wellness’ has therefore been conflated with productivity; ‘to be well’ actually means ‘well enough to go to work’. Ableism is implicit in Wellness. Pimentel and Monteleone point out how “privileged abilities, which are deemed essential, are those that enhance efficiency and productivity.” This explains the increase in workplace Wellness programs which aim to lower healthcare and compensation costs, decrease absenteeism and raise employee morale - all to boost productivity. On the one hand Corporate Wellness may improve the health of some employees, but on the other it perpetuates the myth of a work-life balance which is impossible for most in our current system. Wellness encourages us to ‘optimise’ ourselves and ‘recharge our batteries’. It effectively promotes the idea the able-body is a smooth running machine. This in turn renders the sick and disabled, often unable to work or participate in conventional wellness activity, defective products. 

The medicalisation of disability, in the quest to cure conditions, positions disability as a temporary mode of existence - and therefore sees care as the exception. It supposes that disability will reduce the individual's quality of life and the aim is, with medical intervention, this disability will be diminished or corrected. Tirchkosky and Michalko explain: “People may subscribe to one particular story of disability. An important story today says that disability is a social phenomenon produced by a society’s failure to respond adequately to impairment... This story, however we judge it, does not eliminate other dominant storytellers, such as medicine, that tell the story of disability as something unwanted that lurks in an individual and must be rooted out or managed.”

Originally, the medical model understood (male) physicians as the experts, and those with disabilities incapable of knowing what they need in the way of healthcare and other services. Today, people with disabilities do have a growing voice in medical discourse, they are increasingly ‘heard’, much to their own efforts in a struggle for inclusion into the conversation. Dr. Halbert L. Dunn draws a distinction between ‘good health’ as the “cold, hard truths” of modern medicine, and ‘wellness’ as an active, ongoing pursuit subjective to the “the uniqueness of the individual”. The recent wellness movement demonstrates a shift away from regular medicinal cures to bodily self-improvement. In a system where certain people are prevented from having the opportunity to achieve wellness, it is obviously a privilege to be able to make choices for yourself that serve your well-being. The Wellness industry perpetuates the discrimination against people with disabilities as it assumes that we are all able-bodied and most issues are solvable though health eating, exercise and expensive products. Publications, brands, and organisations often only represent able-bodied (as well as white or light-coloured heterosexual) people in their imagery and branding. 

‘Wellness’ in these terms stands for life in terms of wealth, power, race and ability. Johanna Hedva makes the point it is therefore both an innate moral virtue and a person’s responsibility to maintain. Furthermore, it moralises the sick situating wellness as a choice. It presumes if you are sick you are ‘too weak’ or chose not to ‘get better’, and unlike in medieval times when it was understood that you could have a disability and be ‘well’, Wellness assumes if you are disabled you are inherently unhealthy. 

Ableism is, according to Haley Moss, the issue in Wellness we are not addressing. Moss describes a situation at work where they were encouraged by a manager to sit on a ‘health and wellness’ board because of their autism. They reminded them that just because they were autistic did not mean they were uniquely qualified to discuss the topic. Moss explains that “disability is a form of diversity, not a synonym for unhealthy...“It is possible to be someone with a cognitive or learning disability, or be physically disabled - and be healthy”. Most fitness centres fail to consult people with disabilities in regard to their design, because they are presumed to be unfit to attend. In addition to their failure to be physically inclusive, Moss highlights that “gyms in general are exclusionary to people with disabilities that affect sensory processing (including autism), with their bright lights, loud music, and sweaty crowds.”

The Wellness industry is fuelled by our ongoing pursuit for health and an abhorrence toward sickness and disability. As Carol-Ann Farkas points out, it reveals the turning inward of agency, as opposed to the turning outward to mobilise for collective transformation. If we believe health is first and foremost an individual's own responsibility, we abandon an interest in the wellbeing of the collective. Wellness culture is evidence ableism and capitalism are not only entangled, but mutually reinforcing. We can therefore surmise that the person who is sick or with disability will continue to be seen as dispensable in society for as long as economic profitability comes first.

The hidden disability sign and its perceived need to be there says much about the wellness of a society in terms of understanding and tolerance of each other and our needs. The citizen should be left to exercise their compassion and take the decision not to use the facility with enhanced accessibility when not necessary. Whilst the umbrella term of ‘disability’ is at first desirable for all the reasons stated, it does not promote understanding. Not being able to recognise the difference between Alzheimer’s and Parkinson’s Disease will not encourage empathy and as a consequence, the provision of strategic care.

Humanity has always struggled to make sense of disability in, or out of the womb, and still need signage to ensure attitudes do not turn hostile when under stress. The cynic might claim that the motivation to improve the lives of all citizens is really just good business sense, and that compassion, respect and inclusion are just illusions. It makes good sense to ‘include’, if managed carefully, it will enhance profit. Activist Sinead Burke has said that perhaps tokenism, quotas and visibility are the ways starting points to internal action and change. From her perspective, “whilst we are waiting for empathy to catch up in how we lead and how we do business, if proving the profit and loss value diversity is a way for us to push open the door, that is a compromise I am willing to make for right now, and then to translate the value beyond profit margins.” 

The presence of the hidden disability sign in its present form might suggest we have come a long way on the road towards tolerance and understanding, We have, but it has not been straightforward progress, and there is still some way to go. In the meantime, we will, unwittingly, continue to disable those who have a difference. Perhaps the true disability is that of an ableist society to construct a fully inclusive world.

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