Disability – who and what is disabled?

Since time immemorial, people who are 'different' have been excluded, shamed, pitied, patronised, punished, attacked and killed. History reveals that our species has a great propensity for flunking the Humanity Test. Each epoch and set of beliefs carries with it various attitudes, practices and policies towards people with disabilities, all of which continue to exert their influence on the experience of disability.  

The complex and troubled ways that disabilities have been regarded and responded to have coalesced and crystallised into a number of theoretical models or ways of thinking about disability today. In Chapter 3 of my book I consider the three main ones – the moral, medical and social models – and add a few more. In this extract, I move chronologically from the medical model, through the psychological, to the social and apartheid models. 

We will fix you: The medical model 

In 17th and 18th century Europe, with advances in medicine, science and philosophy, disability came to be seen as more a technical challenge and less laden with religious or supernatural connotations. In this optimistic Age of Reason, it was assumed that any impairment or deficit could be diminished or eliminated through education, physical therapy, prosthetics and medical science.  

The person with the disability was now to be regarded clinically, as like a broken machine. The physical defect was to be identified, labelled, treated, fixed, managed or accepted, and some steps taken to accommodate disabled people, for which they were expected to be grateful. There was less judgement and moral interpretation. The person was entitled to assistance, to full citizenship; to an education – the first special education schools opened in the 1770s. Thomas Blacklock, a blind poet, philosopher and cleric, wrote On the Education of the Blind in 1774, citing examples of when blindness can be a spur to great achievement – a 'less is more' possibility that upended previous negative conceptions of disability. 

In What Psychotherapists Should Know About Disability, Rhoda Olkin, a polio survivor, writes:  

"The main contribution of the medical model is its repudiation of the view of disability as a lesion on the soul. Further, the medical model has spurred medical and technological advances that have improved the lives of people with disabilities." (1999, p.26) 

The medical model remains the prevailing orthodoxy in western healthcare provision today. But it is a normative model. It promotes a binary us/them split, in which the 'us' people project all their fears, anxieties and horrors onto the 'them,' as Wilson (2001, p.679) points out. The disabled person is pathologised, aberrant if not abhorrent. Many times I have sat in a lecture room full of people with CMT while a CMT-free CMT expert explains what our 'abnormal' axons, feet or gait look like, and what they 'should' look like.  

"Thus, the individual with a disability, regardless of personal qualities and assets, understands that he or she belongs to a devalued group."(Smart & Smart, 2012, p.63)  

The person with a disability or disease becomes invisible, their subjective experience irrelevant. Patients are passive recipients of both disease and treatment. Aside from a brief description of symptoms, they are largely silent. Clinics and clinicians aren't much interested in a patient's own phenomenology, their somatic history, knowledge and meaning-making, or in contextual details about what else might be going on in their lives.  

Foucault – the son of a doctor – was highly condemnatory of what he termed 'the medical gaze'. He wrote:  

"The presence of disease in the body, with its tensions and its burnings, the silent world of the entrails, the whole dark underside of the body lined with endless unseeing dreams, are challenged as to their objectivity by the reductive discourse of the doctor." (Foucault, 1963, p.xi)  

Hospitals became increasingly clinical and stripped of hospitality – garages for a medical machine that oftentimes can feel acutely bereft of soul. Any demonstration of humanity by the more soulful doctors and nurses is generally discouraged, although it can live on in the personal warmth and small acts of kindness of individuals, which can almost feel subversive. A nurse once told me she was reprimanded for spending too much time attempting to comfort patients who were about to undergo an amputation.  

Some regard the medical model of illness as deeply flawed. Illich opened his critique with the words: 'The medical establishment has become a major threat to health' (1976/2010, p.3). We are plagued, he wrote, by a society-wide epidemic of iatrogenic (doctor-induced) disease and death; modern medicine has become a rapacious commercial machine, one that sustains itself through its production of clinical damage, its political furtherance of an unfair, sick society, and its tendency 'to mystify and to expropriate the power of the individual to heal himself and to shape his or her environment.' 

All in the mind: The psychological model 

The Smiths song Still Ill asks: 'Does the body rule the mind, or does the mind rule the body?'  

The medical model goes all out for the former; the pendulum has swung too far. But more latterly the pendulum has in some quarters swung too far the other way, fuelled perhaps by western flirtations and interpretations of Eastern thought, the 1960s and a spiritual hunger born of a surfeit of materialism. The psychological model regards physical symptoms as indicative of something unresolved in the unconscious, a problem in the psyche, a sickness of the spirit. One result is the kind of cultish New Age quackery that can sometimes become dogmatic and extreme – psychofascism. For these kinds of evangelical positive thinkers, angel therapists and other self-appointed psychics, faith healers and metaphysicists, individual power and responsibility are inviolable; they see health and illness as a psychological choice. The 'mind' advocates can be just as dogmatic as the 'body' medical- model types they seek to critique. Many are widely accepted as balanced and reasoned yet offer victim-blaming explanations or unhelpful metaphors which all-too-often can be moralistic and punitive.  

One such is Gabor Maté, the widely respected, indeed adulated, Hungarian-Canadian doctor, writer and public speaker. He declares on his website:2  

It's my belief that diseases like cancer, ALS, multiple sclerosis and so on, that cause so much suffering for people, all come along to teach something – and that if the lesson is learned, with compassion for oneself, then the 'teacher' has done its job and can then take a hike. That's not a guarantee, but I've seen many examples of people who have taken on their illnesses in this way and either survived or far outlived what medical science would have predicted, or at least greatly improved their own quality of life while alive."

So show me some of those people who got Parkinson's, learned their lesson and then got better. It has literally never happened. People do sometimes get better from cancer, it's true, but many do not. Ten million people around the world died from cancer in 2020. Did they all fail to learn the 'lesson' that had been offered?  

That's a cruel thing for anyone to say, especially a medical doctor who presumably believes in the Hippocratic Oath and really should know better. It is barely short of saying that we people with such conditions 'brought them on ourselves' by some failure of character and attitude. 

A call for justice: The social model

The Industrial Revolution saw a huge rise in workplace injuries. Men, women and children suffered horrendous harms in the factories and mills, to say nothing of the appalling diseases engendered in the overcrowded cities that mushroomed to serve the industrial machine. This sparked a corresponding demand for statutory responsibility, which was greatly increased by the vast numbers of injured servicemen returning home from the two world wars. In 1951, 800 members of the British Limbless Ex-Servicemen's Association travelled to 10 Downing Street to participate in a 'silent reproach' to a government that had all but forgotten them. Two MPs who had been injured in World War One, double amputee Jack Brunel-Cohen and the blinded Ian Fraser, championed the cause, as did MP Jack Ashley, who was deaf. There was a growing recognition that, in a civilised society, everyone should have the chance to benefit from education, employment, and a health service that offered treatment, rehabilitation and repair to all, in equal measure. From the 1942 Beveridge report onwards, legislation was implemented to ensure that these things were offered (and also to then cap them, and remove them, as the realisation hit that providing an effective health service also ensured that more people lived longer but sicker lives). By the 1970s, disability was becoming a largely secular phenomenon, but also a growing one, as children became more likely to survive into adulthood, and adults lived longer into older age. 

Disability rights groups emerged, driving a shift away from segregation and towards integration, perhaps accelerated by the elevation of anti-discriminatory consciousness from the civil rights era and the lingering memory of the Holocaust. From the backdrop of horror at what Hitler's Nazi fantasies of white supremacy had wrought emerged a host of campaigning and fundraising charities for different marginalised groups. Asylums and long-stay hospitals, where many people with disabilities were warehoused in dreadful and sometimes abusive conditions, were decommissioned. 'Community care' became a political mantra rather than a description, and sadly failed to materialise as it became increasingly obvious that the community didn't care, didn't want to care and preferred the caring to be done for it, by others, somewhere else. 

In 1976, however, the UK's Union of the Physically Impaired Against Segregation radically reframed the traditional disability debates with their formulation of a social model (Hahn, 1985), which located to the problem not in a person's body or mind, but in the prejudiced, unfair and inhospitable environments around them (Smart, 2001; Terzi, 2004). Disability suddenly got political; disability studies emerged as an acknowledged academic field of enquiry in on its own merit. People with disabilities were now to be regarded as an oppressed minority, denied basic access to education, work, transport, social groups, representation in culture and media. According to Olkin (1999), people with disabilities are united by their shared experience of the difficulties, barriers and prejudices they face in the non-disabled world, not by their physical or mental impairments. Their commonality is their systematic exclusion from society; the prejudice and discrimination they face is more enduring and pervasive than that experienced by any other group (Smart & Smart, 2012, p.69). 

The social model rejects pity and charity and instead demands justice. It has been used to great effect by many courageous, dedicated disability activists to bring about great political change. The United Nations released the Declaration on the Rights of Disabled Persons in 1976, made 1981 the International Year of Disabled Persons, and in 2006 issued the international Convention on the Rights of Persons with Disabilities.  

But disability is an atypical demographic for a minority group. By entirely focusing on a presupposed monolithic oppression and ignoring the contribution of any physical impairment to a disability, individual differences and identities are potentially erased. 

The nature of the disabilities themselves – and their attendant challenges – are extremely diverse. Even within one family affected by a single condition – such as my own, with CMT – there is a variety of presentations. Within the world of disability at large, however, the quality and quantity of differences are so broad in scope as to render the catch-all term almost meaningless. I have enormous empathy for, say, someone who is blind, deaf, or intellectually impaired, or uses a wheelchair, or is in unending pain. We share our humanity and soulfulness and vulnerability. We share the experience of being excluded and overlooked. But each of our stories is unique; I do not presume to know how other disabled people feel or what their specific challenges, abilities and needs might be. 

Furthermore, branding everyone with a disability with the same label serves to exacerbate the very them/us division, the 'othering', that disability activists want to destroy (Owens, 2015: 389; Shakespeare, 2018, p.19); it highlights difference in in a bid to be treated just the same. The social model, like other minority liberation movements, thus has the potential to reinforce the barriers it seeks to abolish and, by reinforcing and drawing attention to negative aspects of group identity, it can induce victimhood,.  

In this way, Fraser (2000) says identity politics can become inward-looking and sectarian, homogenising its members for the purposes of advocacy and political change. Fraser prefers an individual, 'identitarian' approach that highlights autonomy. Owens (2015) proposes a more nuanced, pluralistic conception of disability based on the writings on power and plurality of Hannah Arendt.

"This allows for an elaboration of the complexities, contradictions and common aspects of disabled people's experiences, instead of incorporating them into one collective understanding that excludes aspects of each person's experience." (Owen, 2015, p.394)  

Levitt proposes an 'active' model (2017) that focuses on the agency and actions of the disabled person , empowering them rather than challenging the disabling environment. Also of note is the human development model of disability (Mitra, 2018), based on economist Amartya Sen's work on the role of human individual capability in poverty reduction. These post-social model ideas vary in scope but are all enabling in their foregrounding of the agency, capability and participation of disabled people – who have, of course, many varied abilities. 

Current reality: The apartheid model  

There is an inherent tension between the philosophy of the medical model (as operated by our government and statutory health service), which locates a disability within the human body, and the experience of a disabled person, who experiences society as disabling. It's as if the government points a finger at people with disabilities and says: 'You lot, you're a problem,' and the people with disabilities reply, in a loud, rousing, united response: 'No, you are the problem!' 

Attempting to bridge the divide with a commonly-used hybrid of the medical and social models is the World Health Organization's International Classification of Functioning, Disability, and Health (WHO, 2001). This sees each person as unique and their level of disability as dictated by the dynamic interactions between their health condition and their socioeconomic and psychological context – what Lewin (1935) called their total 'life space' (Chan et al., 2009). 

All of the above models seem to be either cruel, misguided or incomplete. In Chapter 7, I present yet one more model, which is the one I hope we're heading towards: the humanity model of disability. 

For now, in my view, most of the world today operates largely under a system of disability apartheid – an unholy interaction of the medical model, the social model and human psychology, inflected by the moral model and the evolutionary law of the jungle.  

I realise that using the Afrikaans word 'apartheid' – literally 'separateness' – might seem inflammatory. In no way do I intend to equate the horrendous sufferings of black Africans crushed by monstrous, overtly white-supremacist governments with the experience of people with disabilities in the Western world. But there are equivalences. Racism and ableism are widespread, pernicious and crushing to the human soul – and body. Black people and people with disabilities are united in their being judged solely because of their appearance; being subjected to deeply-ingrained prejudice and discrimination from individuals, groups, organisations and governments, and being relegated to 'that other place', that other world – a para-world. And, as with South African apartheid, these two worlds are a very long way from being 'separate but equal', which is itself a long way from together and equal. 

At its simplest, the disability apartheid model depicts a world where anyone deemed 'disabled' is largely invisible and unwelcome in the non-disabled world unless they can 'pass' for normal (Goffman, 1963). The non-disabled live in 'abled world': a land of growth, a land of potential hope and glory. The disabled by contrast inhabit 'disabled world', which can be a place of solidarity, support and political activism, but also a place of lack, victimhood and powerlessness. There is a hard border and a soft border between the two. The hard border is physical (and political). It has a red light of segregation, and a green light of integration. The soft border is psychological, with a red light of shame and a green light of acceptance. Both borders are porous; lots of movement does happen. 

I have classified the population of the two worlds into four broad archetypes. The non-disabled, I call either dividers or multipliers. Dividers (red light) approve of the apartheid system. They might be prejudiced a little or a lot, consciously or unconsciously. They judge, criticise, moralise and laugh at jokes about disability. Sometimes they act as freelance enforcers of disability apartheid, questioning and policing people with disabilities (people with invisible disabilities face inquisitions on both sides of the border (Kattari et al., 2018)). The dividers are part of the problem. The Multipliers (green light), on the other hand, are part of the solution. They have respect for difference, empathy, tolerance, open-mindedness and an appreciation of diversity. 

The people with disabilities I have characterised as either subtracters or adders. Subtracters (red light) take themselves out of the game. They can be self-critical, sliding into self-pity, victimhood and depression. Adders (green light), by contrast, have accepted the givens of their situation and choose to take responsibility for their life and live it. With vitality and confidence, they go out into the world. 

The multipliers and the adders pass the Humanity Test; the dividers and subtracters do not. 

Which one are you? 

Of course, these characterisations are highly simplistic. Sometimes people can speak or act in a way that supports apartheid; at other times – sometimes in the same breath – the exact opposite can be true. 

The physical border is the nexus of activism, chipping away at dismantling the border wall with improved disability rights and legislation, better wheelchair access, universal design, integrated schools, inclusionary workplace employment practices, public transport for all and a fair system of benefits. Kleinman states that images of chronic illness and disability are bad PR: capitalist ideologies want to represent health and success as they try to encourage consumption or mobilise enthusiasm for governmental campaigns (1988, p.47). The UK government was roundly condemned by the United Nations in 2017 for the way it has treated people with disabilities in the current era of austerity (Butler, 2017).  

Disability rights activists and the social model of disability have successfully highlighted the way individuals and governments treat the most vulnerable members of society. A great many gains have been achieved over the past several decades, transforming the lives of millions. 

The psychological borders are perhaps more enduring. 

People with acquired or progressive disabilities have experienced losses that already take them out of the 'normal' world. Often they have had to say goodbye to beloved careers, activities and places. But there's the bigger problem of the psychological walls of the non-disabled – the subtle and not-so-subtle aversion, hostility, bullying, prejudices and acts of discrimination that make disabled people feel unwelcome and unsafe in the non-disabled world. It also makes it hard for people to accept their disability if no one else does. On the other hand, it's hard to be accepted if you don't accept yourself.  

A well-known but unsourced quote often attributed to Abraham Maslow states: 'In any given moment we have two options: to step forward into growth or to step back into safety.' For someone with a disability, safety is obviously enormously appealing, given how vulnerable we can feel in non-disabled land. We all need sometimes to be subtracters – to retreat from the world, or to hang out and do things with other people with disabilities in disabled land. But we must not give up on growth. 

It's all too easy to see oneself as a victim. Anyone who has ever lived has probably been there, done that, at some time. I certainly have. I hope this book in some way helps the process of victims becoming victors. We can do better. We can individually and together reclaim our soul.  

The Humanity Test is for every body. 

About the author

John Barton is a psychotherapist in private practice in London, with a doctorate in counselling psychology, which he gained in 2019.

Further reading

The Humanity Test: Disability, Therapy and Society by John Barton is out now and available from PCCS Books - ISBN 9781915220127