No one will ever know what it’s like to be a Ghost

Salma Shamel

Artwork: Maxime Hourani, still from "HOMO FINIS", Film, 2022.

My mother passed out on the night of December 22, 1984 when her gynecologist, tipsy at a Christmas gathering, mistakenly directed the nurse over the phone to give her a general anesthetic instead of a local one. When the doctor arrived in the morning, he delivered a baby that was, in medical slang, “a blue baby.” My brother was blue, they explained to my mother, because of a heart anomaly which would improve with an incubator. In Al-Ahram newspaper, my family wrote a thank you letter to the doctor who also owned the hospital. Months later, the newborn felt floppy in his mother’s arms. His head wouldn’t stay up; his bones were contorting. He wasn’t able to walk or talk or recognize anyone. Doctors in Amsterdam, London, New York, Boston, and Istanbul diagnosed differently than Cairo: his heart was fine; this was total brain damage, and it had happened during delivery. Deprived of oxygen, the living cells in the newborn’s brain had all died except for a few, placing him for the next thirty-eight years at the limit between dying and being dead. At a talk, many years later, I heard the philosopher Jalal Toufic say, “To die before dying is to become aware of what one is already: dead while still physically alive, a mortal.”[1]

A mortal is a subject that is subject to death and has the dead alive in him. As a five-year-old, I was like Thomas in Caravaggio’s Incredulity of Saint Thomas painting, but our distrust was different. Unlike the stolid doubter whose index finger pierced Christ’s wound, refusing to believe without direct embodied experience, I prodded my mother’s deepest wound for a theoretical and abstract explanation. I asked her if my brother knew what color was; if he understood what a bad odor smelled like. Does he know what a golden mountain is? Can he put together in his mind the idea of gold and the idea of a mountain? I wanted to hear about cognition, recognition, causes, and consequences. Does he belong to the world of things—inorganic and raw matter—or the world of humans and language? Why do I recognize him while he doesn’t recognize me? And how come he doesn’t recognize you, his own mother? Sometimes my mother would burst into tears, but most often, she gave elusive answers. She never talked about disability or institutional accountability. She often referred me to God. “Go to God,” she would say, “talk to God. If God wills, he will get better.” Prayers, verses, and trojan horses; I prayed and waited and signaled to god that this was the perfect time for an intervention. I would regularly wake up in the middle of the night to check whether he had finally gotten up. All I cared about was to witness it happen before my parents, to be the messenger of good news, the one and only mediator.

Mattresses were changed, blankets shuffled, yet his body lay in the same corner of the living room for thirty-eight years. My mother didn’t admit my brother to a hospital because she didn’t trust hospitals. She turned into an institution when no institution could be a mother. My brother never had an ID card because he never encountered a policeman. His eyes never locked with mine. He had the bedsores of a ninety-year-old at the age of twelve. Unmoving organs and bones heavily pressing on the skin into a tender halo of pinkish white. A bedsore is a mark of a separation, where the body is not one anymore, but fragmented into factions—heart, bones, and kidneys oppressing skin under their weight. If our bones weighed less than our skin, bedsores would not be a thing. 

The absence of mutual recognition left me in a state of one-sidedness that transformed in my teen years into a feeling of innate superiority. “Fucking monster” was all over my diary pages. At home, I refused to sit in the living room, claiming the smell of his drool made me nauseous. At school, his screaming rang in my ears. I had a bone-deep fear at the thought of a friend seeing his postural deformities, pelvic obliquity, and his right foot that had severely turned in and upwards. I hid him from every sight and lied at every occasion: my brother goes to a neighboring school, mid-field on the soccer team, listens to Joy Division, has a half-English girlfriend. I was once dragged by two friends to the soccer field when neighboring schools visited for a tournament; my ashamed self pointed at a guy with short liberty spikes. I felt uncontainable pride that my fake brother was a punk.[2]

I played porno on TV, increasing the volume, and opened his diapers to see if he would get an erection. To lie is to assume a horizontal position, but it is also to deceive. At times, I thought he was pretending, that his entire existence was a lie. At others, I lay in twisted positions next to him on the floor, staring at the same part of the ceiling, daring myself not to move a single muscle. I tirelessly tried to collapse the distance between his experience and mine, to flatten our separate worlds into a deflated one. If only I could get out of myself to know what it would feel like to be in his body. If only I could get to be a living corpse, a ghost-person, to live a life devoid of life, only then could I understand his experience. Without language, being him was the only way of understanding him. Decades later, I would learn that the drive to collapse our differences would repeatedly yield a deadlock, that immediate experience cannot be the only premise of knowledge, that there are ways we can feel and relate to each other without being one another, and that there is a necessity for our differences.

I’m not sure if I failed at talking to god because I failed at talking to my brother, or if I failed at talking to my brother because I failed at talking to god. I mastered the art of counting and cost-benefit analysis. Like capitalists during Covid who triaged the elderly, deeming them unworthy of ventilators, I quantified my mother’s care and could not grasp its imbalances. The number of times she fed him: 3 times a day x 30 days a month = 90 x 12 months a year = 1080 x 20, 25, 30, and now 38 years. Today, she has fed him 41,040 times. I did not understand the way my mother severed equality of value from equality of capabilities. How come I received incomparably less when I was worth much more. What are our economies of worth linked to? For a while, I thought that my mother and I had incompatible orders of worth. I saw worth linked to the social spheres (mutual recognition, school, and love) and she saw it linked to the necessary burden for the continuation of life. Decades later, through the work of Marx, I understood that these orders weren’t so separate.

When I arrived in the US for graduate school, the classroom was dominated by a theory ashamed of human consciousness and agency: Can the mosquito speak? Can the scallop critique? Do pipelines have agency?[3] The aim was to create a pre-critical, pre-modern, pre-individuated world where humans and non-humans are just equal actors in a free-floating monistic blob. A theory that can only be achieved by pre-modern discourses, “a kind of spiritualism without gods,” as Slavoj Žižek would say.[4] Although antihumanism was nothing new (Heidegger, Freud, and Nietzsche long ago told us that humans are primarily driven by irrational, unconscious desires), I found the discussions in the classroom more barren, more bleak. My frustration came out in Skype calls with my mother, who hated nothing in life more than philosophy: “Mom, my peers want to get rid of the human. They want a philosophy of infantile minds, infant from Latin in ‘not’ and fant from fari “speaking,” not speaking and not judging. They claim consciousness belongs to the world of modernity.”[5] My mother, never interested in concealing her lack of interest, responded, “Well, that’s how the West is. But, you can’t get rid of something you’ve never had.”

My mother missed the point. The issue wasn’t about a privileged West giving up the universal categories it had once coerced the world into by spreading its pedagogy. In her incredible book Juridical Humanity, Samera Esmeir re-reads Fanon to tell us that the human has always been present despite colonialism’s claim of its absence. Writing about the introduction of modern law in colonial Egypt, Esmeir claims that the violence of colonial logic is that it posits ‘humanity’ as something that can be confiscated or given. It monopolizes the concept of humanity. It declares to humanize the colonized as if they were never human to begin with.[6] Esmeir wants to show us that this project of “humanization” has erased an understanding of “the human” which was once present in the Islamic mystical tradition, and that had nothing to do with our narrow definition of consciousness and agency. The human was “the organic and inorganic—stars, rocks, and plants,” it was “the stone in the mountain.” Esmeir wants to show us that the violent moment in colonial history was not that the colonized had been excluded from “universal humanity” (like what the anti-colonial poet Aimé Césaire claimed), but that it has, precisely, been included in universal categories. And in such inclusions, other traditions were eradicated. The way out, then, was to eliminate the universal and retreat to the world of tradition.

But which tradition to rescue and which universal to eliminate? Is a unity with the world without any differentiation or understanding of autonomy, dignity, and alienation what we need? Is universal humanity a one-sided concept that has to be purged wholesale? We actually need the universal to be able to speak to one another about the hypocrisy of the framework, to be able to point to the exception. To dwell in the exception is to become aware of what the universal is: a porous conception, never fixed, available for us all to challenge, modify, and alter. We don’t need unity with the world; we need responsibility. Rocks and stars and rivers cannot stop the hoarders, cannot release prisoners, and cannot build institutions to house and care for those who need it. Unlike rocks that can pile up on the shore, or animals that can roam the streets for sustenance, my brother’s existence is founded on my mother’s labor, on her ability for life creation.[7]

Those who create life and those who are unable to create life have a lot more in common than we think. In 1983, J. C. Romeis argued that alienation resulting from disability was undifferentiated from alienation resulting from capitalist exploitation.[8] In a way, severely exploited workers who make the life of others possible and impaired individuals who aren’t able to make their own lives possible shared similar worlds: the former’s value is their extractable ability, and the second’s non-value is  their unextractable disability. This is, perhaps, what it means to make the reproduction of life common to all. An idea I have also encountered in the work of the Soviet philosopher Evald Ilyenkov. Ilyenkov was one of the main figures behind the Zagorsk experiment, a Soviet movement centered on the study of disability in Marxist analysis in the 1960s.[9] The human universal, for Ilyenkov, was not a modern category of pure freedom or a detached form of reasoning. It was the figure of an impaired child. Not the fetishized and authentic infant existing before and above history, proving that modernity is the source of all evil. Rather, the impaired child in Ilyenkov’s work was a way to open the seemingly self-referential nature of what it means to be able in a capitalist world; to open up what life really means.[10] To keep the disabled alive is to become aware of what life already is: an ability to prevent the dead from dying, a continuation of organic life.

Last year, one of my closest friends in Egypt was arbitrarily arrested and held in solitary confinement. Weeks later, he was luckily released as a result of international pressure, unlike thousands of other incarcerated people. When I spoke to him on the phone, he told me how the conversations with prisoners across the hallway had kept him sane, and how he had formed intimate relationships with people he had heard but never seen. There was something striking in the way he narrated his experience during these weeks. He told me how his prior knowledge as a criminal justice researcher—the fact that he knew about the conditions of Egyptian prisons before actually being in one—had, in a way, made his experience less violent. He knew, in a way, before actually knowing.

To know before actually knowing is to become aware of what experience really is: an open conception that cannot be understood outside of mediation, language, and difference. In his History and Freedom lectures, Adorno tells his students the story of his house being searched by the police in Nazi Germany. The experience of such an event, where one might vanish without a trace or run for their life, is much graver than any explanation a newspaper can offer, or any theory can provide. In other words, when we experience something, this immediate knowledge has the capacity for greater meaning for us than pure theory. The problem is that this immediate knowledge, which is important to hold on to, is nothing more than our own immediate experience––it can only be grasped within a larger context, which then manifests itself in these individual facts. Adorno says something crucial here: he could not have experienced the house-search the way that he did had he not linked it in his mind to the changes in the government, the emergency laws made permanent by the Nazis, and the abolition of safety measures he priorly knew about. “If all that had happened,” he states, was that “two relatively harmless officials belonging to the old police force had turned up on my doorstep, and if I had had no knowledge of the complete change in the political system, my experience would have been quite different from what it was.” And, similarly, no one can fully grasp the terrors of an authoritarian regime if he had not experienced that ominous knock at the door to find the police waiting outside.[11]

In other words, we have to resist turning immediate experience into the primary form of politics. In the US, I first encountered the political discourse of staying in your lane, widespread in both organizing and academic context, in which legitimation comes primarily from who you are, from your ‘position,’ so to speak, and not from the force of what you say.[12] One frequently hears sentences such as “no man can know what it’s like to be a woman; no white can know what it’s like to be a black person; no straight person can know what it’s like to be queer.” These insular discourses produce political dead-ends. I lived most of my life not knowing what it was like to be a ghost. The ghost has taught me that the real is more complex than an experience of hearing the doorbell ring, the life lived by the disabled, the female, or the black body. The real is the nature of the system as a whole that makes it possible for policemen to abduct us from our homes; to live in a world where disabled bodies are cloistered; where exploited workers become disabled; where mothers turn into institutions; and where racism and sexism infiltrate our every relation. No one will ever know what it feels like to be anyone else. There will always be a body more discriminated against. “False immediacy,” Adorno states, convinces us to take experience and turn it into an absolute. Our work is to neither negate it in favor of mediation, nor to exaggerate mediation. It is simply to say that we can keep the tension between both.

[1] Toufic, Jalal. “New York book launch: Jalal Toufic, What Was I Thinking? Lecture by the author and conversation with Walid Raad.” e-flux journal, 28 February 2018,

[2] According to Hegel, the failure of mutual recognition results in one-sidedness, and one-sidedness is both a state of greatness and guilt. This is what defines tragedy for him. Tragedy arises when the conflict between two positions, each of which is justified, yet each of which is at fault to the extent that it fails to recognize the validity of the other. As Mark W. Roche explains it, “For Hegel tragedy is the conflict of two substantive positions, each of which is justified, yet each of which is wrong to the extent that it fails either to recognize the validity of the other position or to grant it its moment of truth; the conflict can be resolved only with the fall of the hero.” How to understand other forms of one-sidedness that are not necessarily premised in agential relations? How to think of one-sidedness when there is no hero involved? Mark W. Roche. “Introduction to Hegel’s Theory of Tragedy.” PhaenEx, vol. 1.2, 2006, pp. 11–20.

[3] The reference is to Timothy Mitchell, Michel Callon, and Andrew Barry respectively.

[4] Žižek, Slavoj. Absolute Recoil: Towards a New Foundation of Dialectic Materialism. Verso, 2015, p. 9.

[5] Adorno gives a good explanation of why such thinking (ontological or Heideggerian) reaches a deadlock in the section “The Child’s Question” in Negative Dialectics, p. 110. He explains how the return to the “childhood of the species” ends up being in a state before and above time. The naivete of such thinking is in fact un-naive. For a discussion on how new materialism employs this child argument see Benjamin Boysen, “The Embarrassment of Being Human: A Critique of New Materialism and Object-Oriented Ontology,” Orbis Litterarum, vol. 73, no. 3, 2018, pp. 225–42. Wiley Online Library,

[6] This idea that takes up the concept of “humanity” as a desirable end, not a means to an end, comes from the logic of enlightenment, according to Esmeir, as best articulated in Immanuel Kant’s famous “humanity is an end in itself.” The problem for Esmeir is that such a conception of humanity exists between a dualism (of end in itself/means) which forecloses a third scenario where the human is neither a means to an end, nor an end in itself, but a means “to no end.” “A pure means,” as she states, “humanity as a means in itself.” See Samera Esmeir. Juridical Humanity: A Colonial History. Stanford University Press, 2012, p. 75.

[7] For an excellent discussion of what Marx called in the 1844 manuscripts the “inorganic body” of the human see Judith Butler. “The Inorganic Body in the Early Marx: A Limit-concept of Anthropocentrism.” Radical Philosophy, vol. 2, no. 6, 2019.

[8] Industrial capitalism produces disability on two fronts. First, through the  perpetual accumulation  of wealth, the capitalist lengthens the working day and intensifies the exploitation of the mind and body of the worker. As Karl Marx puts it, page after page, in describing the potters class as “generations of stunted, short-lived and rapidly replaced human beings,” they are “ill-shaped, and frequently ill-formed in the chest; they become prematurely old, and are certainly short-lived…”These ill-formed generations are unable to sustain a standard worker body and have to withdraw from work. In this withdrawal, they become labor-disabled. On the other hand, those unable to labor are excluded and erased. “The primary oppression of disabled persons,” writes Marta Russell, “is their exclusion from exploitation as wage laborers.” See Marta Russell. “Disablement, Oppression and Political Economy.” Journal of Disability Policy Studies, vol. 12, no. 2, 2001, p. 88 and J.C. Romeis. “Alienation as a Consequence of Disability: Contradictory Evidence and Its Interpretations.” Sociology of Health & Illness, no. 5, 1983, pp. 25–41.

[9] Ilyenkov saw in the Zagorsk School—a Soviet boarding school for deaf-blind children—a chance for the figure of the impaired child to be recognized as a universal being. In an unconventional reading of Spinoza, Hegel, and Marx, he argued for a theory of the thinking body, a body that is aware of other bodies in space, as a fundamental feature of consciousness.

[10] Karl Marx uses both labor-power and labor-ability (Arbeitskraft or Arbeitsvermögen) interchangeably, but English translations often only use labor-power.

[11] Adorno, Theodor. Lectures on History and Freedom. Polity Press, 2008, p. 20.

[12] Jay, Martin. “Experience without a Subject: Walter Benjamin and the Novel.” Cultural Semantics: Keywords of Our Time. University of Massachusetts Press, 1998, pp. 47-61.