Distraction Free Reading

Complicating Disability: On the Invisibilization of Chronic Illness throughout History

Introduction

At the time of writing, the world is entering the third year of the Covid-19 pandemic. As the highly contagious Omicron variant of the virus is causing cases to surge in numerous countries, media and public health narratives have been dominated by speculation that the virus appears to cause less severe illness and fewer deaths, and that this is the natural trajectory of a pandemic nearing its end: a virus continues to mutate and gradually evolves to be more transmissible and less virulent, eventually becoming endemic and mundane. Much of the general public has taken up the rhetoric of public health agencies, which assert that we should be encouraged by the fact that severe illness and death from the virus almost exclusively occur in the unvaccinated and those with pre-existing conditions (Dickinson 2022; Mateus and Murray 2022; Ominous 2022). This is necropolitics: society has designated it acceptable for certain groups of people to die (Mbembe 2019).

In addition to communicating necropolitical norms, these public health narratives exclude the problem of long-Covid, a syndrome experienced by some people who contract the virus. This syndrome results in a wide range of chronic symptoms that include cognitive and autonomic dysfunction and debilitating fatigue.

Wong writes that disabled people are oracles; our experiences of marginalization make us attuned to the precarity of sociotechnical systems and thus uniquely positioned to identify looming societal catastrophes and the measures needed to mitigate them. Whereas long Covid is largely invisible among the nondisabled public (Davis 2022; Haagaard 2021a; McCone 2022), disabled people especially within chronic illness spaces have been prophesying the impact of long Covid since early in the pandemic. We are aware that it will be one of the most significant mass disabling events within recent history. We are also aware of how society will respond to the newly disabled people who survive the pandemic: in the same way that it has erased long-Covid from narratives about the impact of the virus, it will seek to erase those who develop it.

This ongoing crisis affirms a need to define and examine how disability is constructed through processes of invisibilization mediated by the clinical gaze. There have been numerous attempts to refine existing models of disability to better reflect gendered experiences of disability, and integrate embodied experiences of chronic illness and madness (Garland-Thomson 2011; Kafer 2013; Price 2011; Thomas 2007; Wendell 1996). However, none of these has interrogated the mechanisms by which society constructs disability through refusal of clinical recognition, nor have they interrogated the significance of this distinct construction.

The British Social Model and Clinical Ways of Seeing

Historically, disability scholarship has recognized two dominant conceptual models of disability that operate in tension with one another. The first is the medical model, which is a rhetorical apparatus that was developed to critique modern clinical medicine’s approach to disability (Hogan 2019). Under this model, the clinic is said to conceptualize disability as a functional deficit located within the bodymind of an individual person.

The clinic is  a normative system of biopolitical sorting and control, and health is the normative construct according to which it regulates people (Tremain 2005, 2015). It does so by defining standards according to which bodyminds should function, assessing bodyminds according to those standards, and repairing bodyminds that do not meet them. When a non-normative bodymind cannot be repaired, it is deemed deviant, or disabled (Thomas 2007, 15-48).

To contest this system of clinical violence, British scholars of disability have posited a social model of disability, which locates the mechanisms of disablement within a society that devalues and fears disabled life (Oliver 1990, UPIAS 1975). As a corollary to the medical model, the social model explores how the clinic’s ways of seeing and knowing produce disability. But as Oliver notes elsewhere, quoting Lukes, “…every way of seeing is also a way of not seeing” (Lukes 1973, 149-50 in Oliver 1990, 45).  I argue that the clinic’s ways of not seeing also produce disability.

Making Disability Invisible: A Brief Clinical History of Neurasthenia

Neurasthenia and myalgic encephalomyelitis provide case studies in the historic clinical and social production of invisible disability that reflect and predict the emerging era of long-COVID. I will begin by examining the overlapping narratives constructed around them by clinicians and historians of medicine, and reflect on our present crisis to propose an alternative narrative.

In 1869, physician George Beard provided the first comprehensive description of an illness with which clinicians had already been familiar for some time (Beard 1869). The severity and presentation of this illness were highly heterogeneous, but its most common symptoms included debilitating fatigue, widespread and variable pain, cognitive dysfunction and general malaise. Its onset could be triggered by a variety of stressors, both physical and emotional. People were rarely killed directly by it, but instead lived, “at a poor, dying rate” (Beard 1869, 219). Beard named the illness neurasthenia, reflecting his belief that it stemmed from a weakness of the nervous system (Beard 1869, 217). He also believed that it was an affliction to those who were, in his estimation, of superior intellect, class and race:

Both anaemia and neurasthenia are most frequently met with in civilized, intellectual communities. They are a part of the compensation for our progress and refinement. (1869, 217)

Beard’s white supremacist classism notwithstanding, neurasthenia was prevalent in the working classes: a 1900 study by Swedish physician Karl Anders Petrén found that more than two-thirds of his neurasthenic patients were working-class (Shorter 1992, 225). Thomas Savill, a neurologist working in London, conducted extensive studies on the presentation, treatment and aetiology of neurasthenia among the inmates of the Paddington Workhouse from 1885 to 1892 (Savill 1908).

By the end of the 1890s, neurasthenia was a popular diagnosis. Records from London’s National Hospital for Relief and Cure of the Epileptic and Paralysed, a charitable facility that was dedicated to the treatment of nervous disorders, show that incidences of the diagnosis increased steadily after its first appearance at the hospital in 1896, peaking in 1906 at 11 percent of total discharges. From this time until the late 1920s, neurasthenia remained common at Queen Square, after which case rates dropped sharply, disappearing entirely from the hospital’s records by 1941 (Taylor 2001).

The rise and precipitous fall of the neurasthenia diagnosis figures heavily in contemporary accounts of its role in the history of medicine. It is commonly portrayed as a “fashionable” illness that reflected a rapidly evolving understanding of the mind and nervous system. It is widely accepted that as psychiatry became more sophisticated, clinicians became better-equipped to accurately recognize emotional disorders instead of attributing them to invisible bodily pathologies, resulting in the reassignment of neurasthenia’s symptomatology to psychiatric diagnoses (Greenberg 1990; Overholser and Beale 2019; Stubhaug et al. 2005; Wessely 1990) In 1894, Freud proposed the concept of conversion, according to which patients convert psychological turmoil into somatic symptoms (1962, 45-61). Physical illnesses for which no physical cause could be found came to be understood as psychosomatic—somatic in their presentation, but psychological in origin. By the 1930s, neurasthenia and illnesses like it had disappeared from history. For fifty years, there simply were no nervous disorders, no functional diseases, no invisible illnesses.

Then, in the 1980s, a mysterious illness began to affect millions of Americans. Like neurasthenia, this illness had a highly variable symptom profile and was characterized by severe fatigue, cognitive dysfunction and chronic pain. It rarely killed people directly but rather, “turn(ed) them into confused invalids” (Cowley et al. 1990). It was known by a variety of names: low natural killer cell syndrome, chronic fatigue immune deficiency syndrome, myalgic encephalomyelitis (ME) and, derogatorily, the ‘yuppie flu,’ an echo of Beard’s disorder of, “civilized, intellectual communities” (1869, 217). Fifty years after it disappeared, neurasthenia had returned (Wessely 1990).

Shorter and Wessely respectively take the psychosomatic and biopsychosocial aetiologies of neurasthenia/ME as fact. In support of this, they point to a variety of factors: historical shifts in patients’ reporting of certain groups of symptoms that seem to follow contemporary clinical logics about what constitutes legitimate disease, reports of patients who appear to be healed by placebo treatments, and patients’ own resistance to emotional and psychological explanations for their symptoms.

I propose an alternative reading. Influenced by natural scientists who described and mapped elements of the external world in an effort to discover the relationships between them and the rules that governed them, early pathologists described and mapped elements of the human body. Through their work, sickness came to be understood as something that has a specific, concrete, observable, organic location in the body. Symptoms became signifiers; they were meaningful only insofar as they referred to organic pathology.

Physical symptomatologies that could not be linked to an organic referent became classified as functional disorders (Shorter 1992, Sullivan 1986). These disorders offered two possibilities, both of which threatened the clinical gaze by demonstrating its fallibility. Either there were lesions that the gaze could not find, or these illnesses were not real and the clinical system had failed to reccognize that the myriad, mysterious “nervous disorders” with which it had grappled for a century were nothing more than widespread malingering

The emergence of the psychoanalytical framework offered a way for illness to be real without being physical. This resolved the imperative to seek organic aetiologies for all diseases without requiring any acknowledgment of the limits of the clinical gaze.

The clinic, fundamentally an apparatus of the capitalist state, was able to become more economical in its efforts toward diagnosis and cure. Clinicians would continue to seek biological causes for the most severe diseases, that is, the ones that were judged to offer the best eugenic return on society’s investment if biological research could lead to their eradication, either through cure or eradication. At the same time, less serious diseases could be allocated to the psychic realm. These would include diseases deemed less disruptive to society, as well as ones for which biological legitimation posed a risk to the capitalist economy—for example, those that cannot be cured or prevented, but which dispose a bodymind to requiring inordinate amounts of rest.

Beyond the boundaries of the clinic itself, the concept of psychosomatic illness facilitated the social invalidation of chronic illness. It accomplished this by opening up a liminal space between real illness, over which a sufferer has no control, and malingering, over which a person has full conscious control. In this middle space of somatization, a person can make themselves sick without being aware that they are doing so. In order to judge such a person, it is not necessary to believe that they are malevolent, merely that they are weak-willed. This facilitates judgment by removing the requirement to attribute intent.

Moreover, capitalist society is better served by the attribution of invisible illness to somatization than to malingering. If a person is failing to participate in capitalism by consciously making themself sick, they have the ability to normalize themselves but not the inclination. By contrast, if a person is making themself sick merely because they are weak-willed and lack awareness, they will have both the ability and the inclination to normalize themselves if only they are told what they need to do.

Enacting Clinical Violence Through Clinical Critique

By the time ME had gained hold in the collective consciousness of the United Kingdom and North America, the British Social Model (BSM) had already been articulated and the disability rights movement was well underway. For fifty years, critiques of the clinic positioned overmedicalization as the singular mode of violence through which the clinic exercised and solidified its power. Undermedicalization was never addressed because it had no victims, because its victims had been rendered non-existent by epistemic violence. And so, because critics of the clinic were preoccupied with their rejection of (over)medicalization, they perpetuated the violence of undermedicalization within their critiques.

BSM theorists have implicitly reproduced the violence of clinical invisibilization by tying their concept of disability to an assumption of clinical recognition, and by establishing a hierarchy of political action predicated on that assumption. Barnes characterizes disability as the oppression enacted specifically against those with “accredited impairments” (emphasis added, 2012, 12). Oliver’s assertion that “disablement has nothing to do with the body,” does not inherently exclude the invisibly disabled (1996, 42). However, the clinic produces invisible disability through the epistemic negation of embodied experiences of illness, which means that discursive interrogation of the sick body is necessary to analyze and deconstruct this particular category of disability. Thus, an explicit proscription of the body from the domain of critical disability studies implicitly proscribes invisible disability as well. Oliver further claims that the BSM, “acknowledges that in many cases, the suffering associated with disabled lifestyles is due primarily to the lack of medical and other services…But the real misfortune is that our society continues to discriminate, exclude and oppress people with impairments viewed and labelled as disabled” (2004, 6).

Not only are invisibly disabled people among those whose suffering is “due primarily to a lack of medical care,” denial of medical care is the primary mechanism by which society produces this category of disability. Oliver’s claim thus fundamentally subordinates the political concerns of the clinically invisible to those of the clinically accredited.

A smallfat nonbinary invalid sits naked on the floor, facing a blank wall. The grainy, greyscale silhouette of their back resembles a double bass more than a violin, its surface bowed by millions of misfiring neuromuscular junctions. Where a bass has f-holes that open the body up so it can resonate, the back is instead held together by two X-shaped pieces of kinesiology tape.

Portrait of the author entitled L’invalide d’Ingres

Deconstructing Binaries of Disability

Tremain examines the theoretical frameworks of materialist-feminist scholars who sought to “bring the body back in” to disability, and finds that they reproduce the BSM’s dualistic construction of disability-impairment. Consequently, they, “rely on the matter of a prediscursive substrate of impairment,” from which social construction and experience of disability are constituted, rather than considering impairment as the materialized, subjective experience of embodiment that is produced by, “a classification initially generated in certain culturally- and historically-specific medical, administrative, and juridical contexts to facilitate normalisation,” which is to say, by the construct of disability (2015, 31, 38).

In articulating her own historicist and relativist feminist philosophy of disability, Tremain does not explicitly address the construction of disability through the production of clinical invisibility. It may be that she is, in this case, more concerned with elaborating a conceptual framework and methodology than applying it directly. It may also be because, as she asserts, the generation of increasingly specific subdivisions of categories of identity and experience is a strategy through which the neoliberal state extends, “the reach of its normalising and totalising disciplinary apparatus” and flattens multiplicity by classifying subjects into ever more granular and ostensibly homogeneous groupings.  (2015, 18) Distinction of clinically invisible disability from the broader apparatus of disability may thus be considered antithetical to such a deconstructive approach. Nonetheless, I contend that genealogical interrogation of invisible disability offers an opportunity to understand and offer an alternative to the widespread presupposition of a prediscursive body within critical disability theory.

The efforts of materialist-feminist disability scholars to center the “impaired” body within disability theory can be understood as a response to the efforts of early disability rights activists to separate disability from illness (Heumann and Joiner 2020, 22-24, 41; Wendell 1996, 21). Whereas historically, self-advocacy and community explicitly oriented to chronic illness have tended to operate separately from the disability rights movement, this distinction is fading.

Increasingly, there are people who claim both chronically ill and disabled identities, and who participate in communities that merge critical disability perspectives with the “subculture of invalidism” (Shorter’s derisive terminology, which I am reclaiming, 1992, 316). This is likely due in part to the influence of disability justice, a movement originated by disabled people of colour, which is explicitly intersectional in its orientation, and explicitly committed to cross-disability solidarity (Berne and Sins Invalid 2015). Another probable factor is the availability of digital community. Invisibly disabled people, particularly those who become housebound, have historically been isolated both from mainstream community, from disability movements and from each other. This has certainly contributed to the entrenchment of individualized conceptions of illness experience that are so common among chronically ill people. In the same way that early disability activism emerged through community bonds formed among institutionalized people, digital chronic illness communities are facilitating recognition of the widespread and systemic nature of the ways in which invisibly ill people are oppressed by society, and of the ways that oppression relates to systemic ableism more broadly (Barnes & Mercer 2001, 523; Haagaard 2022).

One side effect of this evolving integration is a persistent sense that existing theories of disability are not adequate to fully describe the experiences of chronic illness, and that we need better theories that accommodate the experiences of suffering bodies. While the work of the materialist-feminists address many of the issues that continued to be raised in this ongoing discourse, the fact that it is nonetheless ongoing calls attention to two problems.

First, if we have resolved disability theory’s “chronic illness problem,” why is it that the theories of scholars like Garland-Thomas and Wendell are so marginalized within popular constructivist descriptions of disability that chronically ill people outside academia generally don’t realize they exist until someone cites them to win an argument on Twitter?

Second, if disability does indeed have a “chronic illness problem,” how can that be solved without, “rely(ing) on a prediscursive substrate of impairment?”

I propose that efforts to address chronic illness within disability theory are solving the wrong problem. What the field actually has is an invisible disability problem, and because there is substantial (though not complete) overlap between invisible disability and chronic illness, the structure of this problem has been misidentified. Whereas theories of chronic illness emphasize the materiality of the body, a theory of invisible disability is necessarily material-discursive.

The terms “chronic illness” and “invisible disability” are often used interchangeably, but it is worthwhile to distinguish them here. On the basis of my own experiences, and those that have been described to me by other chronically ill people, I define chronic illness as a phenomenological state of experiencing one’s body primarily as present-at-hand, that is, maintaining a conscious yet nondeliberate awareness of its materiality and the limits of its material properties as you act and perceive through it (Heidegger 1962, 98-107). I define clinically invisible disability as disability that goes unacknowledged by the clinical gaze. Crucially, not all disabled people are chronically ill, and not all chronically ill people are invisibly disabled.

Theories of chronic illness emphasize that there are some experiences of the chronically ill body that are inherently negative, because they are experiences of suffering that cannot be removed by any kind of accommodation. What is being missed is that those negative experiences of the body are still socially produced, and it is being missed because we have been taught by decades of disability theory and anti-clinical critique the the singular strategy through which the clinic disciplines bodies and produces disability is through overmedicalization, and the designation of bodies as deviant (impaired) or as pre-deviant (pre-impaired). Under this partial logic, to say that the embodied suffering of chronic illness is socioculturally produced is to align with Shorter’s claim that invisible disability is a psychosomatic manifestation of cultural definitions of legitimate illness. But this changes when we acknowledge that the clinic also undermedicalizes, that it produces disability through refusal of recognition. When we acknowledge this, the embodied suffering of chronic illness is socioculturally produced through the apparatus of clinical invisibility, which includes denial of access not only to treatment that could ameliorate sensations like pain and fatigue, but to language that can support material meaning-making of one’s embodied experiences, which similarly lessens the suffering associated with experiences of bodily present-at-handedness.

To theorize a distinction between chronic illness and other disability experiences necessitates concession to the prediscursive body because to do so neglects the discursive mechanisms through which embodied experiences of each are produced. Moreover, they are ineffective as frameworks for organizing disabled political consciousness because the boundaries they enact between categories of experience do not align with those enacted by discursively produced categories of disability/impairment. What is needed is a theory that fully examines and integrates both the similarities and differences in the social construction of clinically visible and invisible disabilities.

A Complicated Model of Disability

What is common to the experiences of a person who has been incarcerated within a nursing home because they require support to bathe and feed themself, a person whose parents were encouraged to terminate the foetus because society has assessed that the structure of their DNA renders their life worthless, a person who “disagrees with consensus reality” and who is thus designated as dangerous, a person who has been told for decades that their embodied experiences are not real and who has thus become unsure of their relationship to reality, and a person who has made their home in an encampment that is now being violently dismantled by police? (Lethbridge-Scarl 2022; Soros 2021)

In California, there are two populations of albino redwoods. These trees are born without chlorophyll and therefore cannot produce their own food through photosynthesis. The albino trees survive by networking their roots with other redwoods and receiving sap from them. While reading about these trees, I recognized them as disabled kin, whose unusual support needs met by their community, allowing them to survive and thrive. Biologists characterize them as parasites (Thornton 2011). Society characterizes us as parasites too.

Disability is a state of ontological negation that society enacts against those whose existence is characterized as detrimental to society. The mode of negation that society pursues depends upon how it characterizes a person’s designated parasitism. These characterizations are not singular or fixed, and it is likely that a person will encounter multiple modes of negation throughout their life and within different contexts. The combination and predominance of the modes that they are subjected to will shape their particular experience of ableist oppression and disabled identity, as well as their needs and priorities with regard to political organizing.

There are those whose parasitism is constructed as involuntary and, perhaps, temporary. Society seeks to negate them by fixing them, either through cure or through the provision of reasonable accommodations oriented to normative participation in society. If they cannot be fixed, they may be relegated to the category of those whose parasitism is involuntary but incurable. Society negates these disabled people by minimizing their existence. It accomplishes this by warehousing them in institutions, and by enacting necropolitical and eugenic agendas to limit their current existence and prevent more of them from existing in the future.

Those who require unreasonable accommodations—accommodations that would require a reimagination and reorganization of society’s value system—or who simply decline to participate normatively in society may also be recategorized as voluntary parasites (Haagaard 2021b). Society negates these disabled people by refusing to acknowledge their embodied realities, by characterizing them as weak-willed, lazy and deceitful.

On Invisibility

The language of visibility is contested within the disabled community. The most common critique leveled against it is that calling a disability “invisible” is a concession to the abled gaze, that is, the way that our society both looks at and thinks about people it sees as disabled (Arielle 2019; Barbarin 2018; de Freitas 2020; Higgins 2018)  By making this concession, we position society’s failure to perceive a particular disability as being a result of the attributes of that disability, rather than of society’s limited and stereotyped conception of what disability should look like.

It is widely accepted within critical disability scholarship that the abled gaze plays an active role in the social construction of disability. Garland-Thompson examines how the act of staring was involved in the production of the categories of ‘monster’ and ‘freak’ (2005). Brown argues that the construction of disability is done by the stigmatization of people whom society perceives as having something “wrong” with them; that is, perception is tied to social production (2013). Tremain notes that the materiality and subjectivity of the disabled bodymind are constituted with and through linguistic and social practices, which certainly include looking (2015).

So why do we interpret the language of invisibility as a descriptor of innate materiality, rather than an acknowledgment of a particular mechanism through which disability is produced?

It may be argued that there is no need for specific language to differentiate these experiences within the broader apparatus of disability. Tremain argues that, “all of these distinctions are strategies to naturalize the apparatus of disability” (2022). I contend that genealogical study of clinical invisibility is necessary to the deconstruction of disability and that its neglect within critical disability studies and philosophy of disability derives from and reinforces the violence of the clinical gaze.


References

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2 Comments

  • Etelka Haagaard says:

    An amazing contribution by A. Haagaard. Someone finally speaking up for those who often can’t. Kudos to this author.

  • Kurt Holukoff says:

    In my experience, when my disability has been visible to the clinic, the gaze is probably disgust, pity or hope. When my disability is invisible to the clinic, the gaze is condescending and has been found to lead to violence at the hands of specialists the clinic sent me. Why did the clinic send an invisible disabled person to specialists to suffer violence? It’s probably because of class, gender appearance or racial appearance privileges. A favourite formulation of privilege is that privilege can be measured by what you don’t have to learn. In the case of invisible disability, the opposite seemed to be true in at least my case, as my spouse, similarly disabled but without any of the above privilege, was refused medical care with in some cases exactly the same presentation of illness with the exact same clinician.

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