Notes on Paralysis

Angeli Lacson


Becoming disabled saved my life. Medical terminology categorizes spinal cord injuries like mine as “complete” or “incomplete,” denoting the degree of damage that the spine has sustained. I am not quite either: the fracture in my spine was fixed and secured with screws in surgery, and the tear in the membrane surrounding my spinal cord healed after several months. Anatomically, there seems to be little reason for the extent of my paralysis. “Think of it,” one doctor told me in the early post-injury months, “like your spinal cord is asleep.” In theory, it could one day wake up. But it has been years without any improvement in sensory or motor functions below injury level. There was no distinct point of realization or acceptance; each year simply moved to the next, and my disabled body remained. 

I write from a place in which the permanency of injury and illness shapes every part of life. I take, as my point of departure, the stunning observation by members of the West German Socialist Patients’ Collective (Sozialistisches Patientenkollektiv), in their text Turn Illness into a Weapon, that illness “is the only possible form of life in capitalism,” whereby a cure is not the elimination of illness but “the maintenance of the ability to go to work.” 

I spent my undergraduate years in a state university in Metro Manila, which is, as the local cliché paints it, a microcosm of Philippine society. This is true in that, like the rest of the country, it is maddeningly inaccessible, populated by pre-war buildings with owners that easily sidestep this country’s poorly enforced accessibility laws. As an incoming student, I was told that any accessibility measures I wanted (ramps, mostly) would need to be financed personally, as the bureaucratic budgets had no space for a single student’s access needs—just as they had no space for the needs of the university’s small vendors, jeepney drivers, and contractual workers. 

The university staff were often incredibly kind. Yet facing the indignity (and potential danger) of being carried upstairs is a common experience for wheelchair users on campus. On one memorable occasion, a professor, the sole teacher of a requisite undergraduate class, refused to move my class venue to a room on the ground floor. They instead decided that I would be carried up flights of stairs twice a week. It hadn’t been a problem for a previous disabled student of theirs, they said.

In a country in which education is mostly inaccessible to wheelchair users, my presence in university may seem to solely signal the exclusion that marks the lives of disabled people. But encoded in my very presence are a myriad of class privileges, which differentiate me from a minority largely invisible from Philippine social life: it is precisely because I am unlike most disabled Filipinos that I have attended university, that I could strive for higher education.

I mention these experiences because several times I have been sought out and addressed (both overtly and implicitly) in terms of my experience of disability, which was then assumed to “represent” the interests and concerns of disabled people. But the extent to which I “represent” the realities for disabled people is not only complicated by a social and political system in which I occupy a privileged position; it also relies upon the marginality of the vast majority of disabled Filipinos, whose invisibility, a byproduct of injustice, presumes their inability to author their own stories on their own terms. The need to complicate disability, including my identity as a disabled person, is rooted in the tendency to view disability as a discrete (and often dismissible) issue, estranged from broader considerations of class and oppression.

Though we have been witness to the welcome enactment of civic liberties for disabled peoples—in the Philippines, Republic Act No. 7277 and Batas Pambansa Bilang 344 are two groundbreaking pieces of legislation—I still believe that the present discourse on disability action does little to encourage solidarity across class and identity. That my right to physical accessibility was protected by law, yet easily flouted by university officials, gestures towards the same paradox of “right” and “privilege” that complicates my identity as a disabled person.

In speaking of this project of humanity, I turn to Lauren Berlant, who in Cruel Optimism critiques sovereignty as a “fantasy misrecognized as an objective state: an aspirational position of personal and institutional self-legitimating performativity and an affective sense of control in relation to the fantasy of that position’s offer of security and efficacy.” The concept of sovereignty historically derives from the right of the monarch to, quoting Michel Foucault in 17 March 1976, “take life or let live.” Classical liberalism reframes sovereignty as the foundation of personal autonomy and agency, an affective sense of self-control over one’s individual mortality, which likewise authorizes an individual’s absolute power over their personal domains, that is to say, their choices.

Mere recognition of disability in a system that relies upon producing and naturalizing hierarchies of (in)humanity and disposability renders invisible the millions whose disability and illness are bound up in capitalist production: agricultural workers and farmers, whose proximity to pesticides sold by multi-billion agrochemical corporations means they often become ill while producing the world food supply; workers in the Global South, who work in factories that endanger their health and physical safety; prisoners in the Philippines and across the world, including the mass incarceration system in the United States, where conditions of extreme deprivation and uncleanliness place them at risk of severe illness and rampant infection. A disability politics that refuses the “single-issue” framework must implicate the global regime of capital.

In Regarding the Pain of Others, Susan Sontag writes that narrative renditions of suffering “are more than reminders of death, of failure, of victimization. They invoke the miracle of survival.” Stripped of the veneer of the miraculous, survival is revealed to be the bare condition of life under neoliberal capitalism. As with valorizations of resilience, to view survival as “miraculous” is to engage with larger patterns of erasure that obscure how power and capital keep the vast majority of us teetering on the brink of breakdown or death. Survival in this sense is not simply the act of getting by day-to-day, but a process of a bodily wearing-out, a gradual deterioration felt both psychically and somatically, at once an exhausted inability to persist and the knowledge that the failure to persist means death. This is a process of “slow death,” a term coined by Berlant to describe the wear and tear of reproducing everyday life amidst relentless and taxing crises and the horrifying banality of state terror and violence. 

Notions of the miraculous are particularly suited to my story of illness and disability. The contours of this narrative have taken shape over the years: a mental illness seemingly driven by personal biochemistry; a survival far from guaranteed; the years spent rebuilding a self in the after. Around the time of my university graduation, I received a well-meaning message that mentioned it was “miraculous” to see the life I now lived as a disabled person. “Miraculous”—which connoted that whatever life I now live must be a blessing of the metaphysical, in tandem with some kind of laudable strength or virtue on my part. When we discount the true toll of survival, the essential feature life under capitalism, it can all seem almost inspirational. 

That survival is the fundamental condition of living under capitalism points to the eugenicist undercurrents in the core capitalist ethos. Central to capitalist eugenics is a moral framework of worthiness or merit, whereby one’s ability to work for capital determines their right to simply exist, and the quality of that existence. Succinctly captured in the ubiquitous phrase “the cost of living” is the commodification of existence, whereby one must work incessantly to earn any kind of life, but especially a good one: decent housing, sufficient and nutritious food, clean water, healthcare, fleeting moments of joy or pleasure.

I spent some time contemplating this framework of worthiness when, in order to be granted honors for graduation, I underwent the arduous process of appealing to my university to excuse a lighter, lower-credit semester I took in my first year as a result of my difficulties. The person who very kindly wrote on my behalf attested that my mental illness and physical disability were not hindrances—meaning that I appeared to transcend the inability to work for capital that is a death sentence for the ill and disabled.

The formal category of disability—which, as Fiona Kumari Campbell notes, is enshrined in law (the normative citizen) and science (the species-typical body)—serves to register and assess the individual by the standards of capitalism and its eugenicist components. The unworthy are rendered as what Beatrice Adler-Bolton and Artie Vierkant in Health Communism call a “surplus population”—defined not only by their deviance from the norm of imagined able-bodiedness, but, more critically, their inability to work.

When I was discharged from the hospital, my family and I were immediately overwhelmed by the needs of my injured body. A tracheostomy tube in my throat allowed me to breathe unassisted, but it also required someone to regularly suction the build-up of fluids in my lungs. My skin was covered in numerous surgery scars that needed to be cleaned and rebandaged every day. Mindful of multiple injuries, transferring me from the bed to the wheelchair and vice versa required three people at minimum. Sitting on the toilet was an impossibly drawn-out process that was also bewilderingly painful. We needed someone to turn my body on the bed to avoid pressure sores, to do the frustrating and painful work of stretching my muscles and joints, to insert a catheter in my urethra to drain my bladder. 

The phenomenon of disability “inspiration porn” stems from this precise entanglement. What was inspirational and miraculous in stories like mine was the impression that I could finally return to work, which set me apart from a minority often resented for their dependence. This distinction reveals the fear and unease that surrounds the disabled identity—socially produced anxieties that compel people to perform the healthiness and normalcy that make up the collective understanding of able-bodiedness. During the process of appealing for honors, I felt, not without some bitterness, pointedly aware that I appeared to be the “good” ill student, whose mental illness ostensibly didn’t affect their capacity to participate in the knowledge production system that is the Western-style university. I was likewise the “good” disabled person, whose disability could be managed through my considerable set of class privileges.

In the wake of spinal cord injury, as Christina Crosby writes, “there is no return to an earlier life.” Whatever life I can now lay claim to is due to my nurses, who kept me alive during my most vulnerable months. Their labor likewise grants me the ability to participate in a social life I would otherwise be unable to access. They navigate my wheelchair across the rough roads, steep ramps and curbs, cramped sidewalks, and car-congested streets of Metro Manila. They assist me in performing catheterization, which maintains the health of my kidneys and bladder. They support me when I am moved in and out of my wheelchair, carrying stiff legs that I am unable to move alone. My experience of disability and illness would be fundamentally incomplete without the recognition that my everyday life depends upon their care and their labor. 

The magnitude of my injury meant I had to relearn intimacy: to trust in others despite pain and humiliation, to confront the deep-rooted shame of the need to physically rely on other people to a greater extent than I could have ever imagined. I have come to view my relationship with my caregivers as a kind of “watchfulness,” which Angela Garcia in The Pastoral Clinic writes can “offset forms of alienation,” particularly in times of loss and vulnerability, during which “the healing potential of social commensurability, of keeping watch with one another, remains vital.” The intimacy between my nurses and I means I have likewise been offered glimpses into their lives: our shared frustrations with inefficient government services, their recipes and favorite foods, stories of their families. 

Care work is poorly compensated work, overwhelmingly devalued in all spheres of public life and unappreciated for its vast contribution to the reproduction of private life. As Sandra Laguier observes, this hierarchy is a gendered phenomenon, wherein domestic life is seen as inferior,  unworthy of economic or cultural value. It is feminized work, overwhelmingly assigned to women who mostly hail from the former colonies that comprise the Global South—with an immense number of care workers in the Global North originating from the Philippines.

A radical politics of disability and illness must acknowledge that disability oppression is inextricable from the oppression of care workers and the corresponding devaluation and invisibility of care work. Genuine disability emancipation necessitates the liberation of public-service care workers: from nurses and caregivers to domestic workers, sanitation workers, and many more. The cultural and economic devaluation of care work points to pathways for rebuilding social life in ways that uphold care as essential and valuable labor.

I speak of care work in the context of my three nurses, whose presence and labor grants me access to a life I could otherwise not live. I also speak of the care of my broader community. I do not take lightly that when spaces have not been accessible, it’s often been friends and relatives who have brought me up the stairs and helped me navigate rough roads. It was the administrative staff who ensured my classes were moved to ground level; it was the security guards and janitorial staff who carried me when I needed to reach the upper floors. When the ownership-class capture of state interests allows for rampant privatization, deregulation, and cost-cutting, the world becomes less accessible—a symptom of capital’s all-pervading demands. Community care then becomes an even more crucial form of access for the ill and disabled. Care is not only the work of survival, but of a dignified life for all. 

My spinal injury dates to 2016, when, after several years of untreated depression and near-constant ideation, I attempted suicide. Of multiple injuries, the spinal injury was the most definitive—the decisive factor in my paralysis and consequent disablement. 

It is difficult to be honest about these circumstances. My disabling injury and the fact of my suicide attempt are, in my head, separate entities, entirely divorced from each other. I understand that these truths are intertwined, consequential, causal. Yet I understand this in a detached, rational way that is not how I remember it, how I feel it. In the months following my initial hospitalization, I was overwhelmed by the double grief of my body and my failure, and the ties between the two crushed me.

Still, I insist on remembering that to live is not to fail; that there is no blame here, especially not a younger self who was desperately ill. Perhaps my sentiments speak to some kind of deep-seated internalization of illness and injury as moral judgments. More honestly, it is an admission of guilt for all that I truly feel.

When I feel overwhelmed by these anxieties, I remember the poet Raúl Zurita, whose work I encountered on the day before the third anniversary of my injury. He wrote in the preface to the bilingual edition of his 2009 collection, Purgatory: “I imagined a poem written over the great cliffs facing the Pacific and felt surprised to be alive, surprised that so much time had passed and I could see the ocean.” I remember I first read those words in the middle of a college class, in a part of my life that I had never planned to witness. I remember I found it the most unexpected gift: that I felt surprised to be alive, surprised that so much time had passed. There is something about the generosity of that surprise—our sudden encounter, the utter relief of being eased from the burden of a resolution. Surprise demands nothing from the girl that stood at a ledge years ago, and without the mediation of meaning I can remember her without shame.

Like many other disabled people, I have long attempted to understand the profound alienation and frustration I feel towards my body, as well as my terror at the thought of being physically dependent on others for the rest of my life. Recognizing that disability and illness are shaped by historical processes has comforted me in unexpected ways, as I am beginning to understand the inevitability of (inter)dependence as a necessary recourse in a present besieged by pandemics, state terror, and capitalist violence. While disability and mental illness can feel incredibly lonely, I have likewise discovered others to commune with, new community even in loss.

As I think to the future—one in which I am inevitably still reliant on medication and the care work of others—I return to Berlant’s Cruel Optimism, which casts existence in the after as not “wounded or healed life but in process: the time of gathering [and] wandering.” I contend that part of this gathering entails being-with each other in ways that remake social life from the ground up, collectively cultivating tools that are double-edged, both resistance and repair, a menace to our enemies and a means to mend communities. When you spend every day asking others for help, you learn to cherish care as an idiom of belonging—one that is political as much as it is intimate. Berlant reminds us that, for many, the scene of survival is ordinary life. Nothing is more imperative than to remember that the future we are presently making begins with each other. ♦

Angeli Lacson studied comparative literature. She lives in Quezon City with her five cats.

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