Egypt's Crises of Authority
When Egyptian doctors first experimented with kidney transplantation in the 1970s, the wider public had no idea that the number of patients in kidney failure was ominously rising or that this life-restoring surgery would soon become the object of a contentious debate. By the 1990s, investigative reporters for newspapers and local television channels fully exposed the gory and often scandalous details about the transplantation of kidneys, eyes, and other body parts. Doctors, legislators, journalists, and religious figures all argued and debated vehemently about the ethics of procuring and transplanting parts of the human body, with seemingly no resolution. During this span of decades, Egypt's social landscape was dramatically transformed. Significant social changes included the sharp rise in first-generation literates, the massive rural to urban migration, the nation's huge population growth, the diversification of media outlets that exceeded the mandates of the government, the dismantling of the welfare state, the explosion in number of Egyptian migrants seeking work in the newly petro-rich Gulf region, and the Islamic revival across the Arab world that resulted in the increased dominance of religious discourse in daily life. These changes led, among other things, to less perceived social distance between physician and patient and between religious scholar and lay Muslim. In contrast with earlier generations, poor disenfranchised patients actively contested medical practice, and informally educated lay Muslims engaged in religious interpretation themselves. Subsequent crises of authority in both the medical and religious realms resulted in a continuing unresolved debate over organ transplantation, a practice which provoked the reassessment of ideas of personhood, the meanings of death, and questions about the proper treatment of the human body.
This chapter introduces pioneering surgeons, terminally ill kidney-failure patients, patients blinded by cornea opacity, their ambivalent doctors, and religious scholars. Within each of these groups, ideas and arguments are in constant flux. Amid an increasing gap between minimal public services and high-cost, high-tech private clinics, Egypt's medical professionals disagree on how best to practice medicine. Egyptian physicians see medical knowledge as universal, yet also struggle to adapt it to local circumstances. Egypt's religious world is increasingly fractious, marked by state-appointed religious scholars and their critics, who challenge both medical authority and the state's aims, often through newly decentralized media outlets. Ideas about the dead body, human suffering, and divine will are embedded in longstanding theological debates. Meanwhile, since the 1970s, Egypt's political economy has been undergoing the demise of social welfare and the rise of neoliberal policies that have exacerbated the gap between rich and poor (Mitchell 2002). All of these changes have occurred amid a newly articulated Islamic ethic that calls for social justice, yet one that operates within the context of a political regime that has long presented itself as Western-aligned and democratic while practicing brutal intolerance toward dissenters (Ibrahim 1996; Kienle 2001; Wickham 2002; Mahmood 2005; Hirschkind 2006; Rutherford 2008; EIPR 2009).
In this shifting social reality, biotechnologies and new global markets impinge on notions of bodily integrity. And in the fractious realms of religious and medical ethics, patients, religious scholars, and doctors have found themselves faced with questions about life and death with no firm ground to stand upon. Meanwhile, the biotechnology of organ transplantation itself is quickly evolving. The introduction of new surgical techniques, newer generations of pharmaceutical immunosuppressive drugs, and growing clinical experience all contribute to changing rates of efficacy and survival. In this chapter I explore the ways in which various people have engaged with these slippery, moving targets.
In the late 1960s, when the first two dialysis machines were brought to Mansoura, a provincial city on the eastern branch of the Nile Delta, Dr. Mohamed Ghoneim, a young urological surgeon, insisted that they be located in the department of urology rather than the department of internal medicine. His colleagues at the hospital were both baffled and annoyed. Ghoneim did not see the primitive dialysis machines as stations for the life-support of terminally ill end-stage kidney disease patients. Rather, he foresaw them as providing intermittent treatment for patients whom he would eventually treat surgically with kidney transplantation. He planned to carry out this procedure in what he envisioned would be Egypt's first center for treating kidney disease in Mansoura.
Mansoura? The town was so provincial that scarcely a generation earlier any medical practitioner with even a modicum of ambition would have left it to train and practice in Cairo. And even Cairo did not yet have the capabilities for kidney transplantation, a procedure that was still at an experimental stage worldwide. In the United States, where the first experiments were carried out, the failure and death rates of these operations were exceedingly high.
None of this was to stop Ghoneim. With a streak of anti-elitism that marked him as one of Egypt's most beloved medical heroes, Ghoneim famously sneered, "Where else would we do it? In Zamalek?" Zamalek is one of Cairo's most exclusive neighborhoods-an island in the middle of the Nile and home to the old-guard elite, five-star hotels, and foreigners. Referring to the high incidence of parasitic schistosomiasis infections among the poor rural inhabitants of the Nile Delta provinces, and hence their tendency to have kidney and urological diseases, Ghoneim's pronouncement about Mansoura was swift: "Mansoura is the center of the battlefield!"
And, indeed, in 1976, when a mother in Mansoura donated one of her kidneys to her daughter, Dr. Ghoneim carried out the first kidney transplant operation in Egypt. Ghoneim was not interested in merely bringing Egypt up to pace with this biotechnological accomplishment. He envisioned bringing its benefits to Egypt's rural impoverished patients. Ghoneim began with a limited capacity of two dialysis machines and one hospital bed for transplantation at Mansoura University Hospital; in time, he and his colleagues established an internationally renowned national and public institution for the treatment of kidney and urological diseases in Mansoura. The building was erected on the grounds of a famous botanical garden with the help of funds from the Netherlands under then-president Sadat. Thereafter, the beautifully landscaped and curated institution was sustained by government support and local donations. The Mansoura Kidney Center, formally established in 1983, today provides tertiary health care for a population base of seven million. Kidney-failure patients with family members who are willing and medically eligible to donate a kidney can access a transplant, a life-long regimen of immunosuppressants, and follow-up medical care at no cost. Under Ghoneim's strict protocols and his watchful eye, the physicians at Mansoura painstakingly raised the level of nursing and clinical care and carefully screened donors and recipients to ensure the highest success rates. At this center, transplants have all depended on living donors, and after thirty years of experience, the patient and kidney graft survival rates rival those in the best centers in countries with far greater resources, including equipment, staff, and newer immunosuppressants. The center's capacity for transplantation has grown over the years, and since 2008, it has carried out approximately eighty kidney transplants annually.
Cairo's hospitals and private clinics began to carry out transplantation shortly after Mansoura's early experiments. Various medical facilities in Cairo soon dwarfed Mansoura's capacity, carrying out (often unrecorded) operations that were impossible to quantify accurately. During this second decade of transplantation, stories of the black market and theft of kidneys in Cairo began to circulate in Egypt. By the mid-1980s disturbing reports about a thriving market in human kidneys in Cairo hospitals continually appeared in Egyptian newspapers, both the state-owned dailies and, in more provocative tones, in the opposition-party news. Evidence of blatant medical misconduct, including graphic images of people with large, protruding surgical scars, and allegations of organ theft fueled popular resentment against government corruption and the mismanagement of state medical institutions. Criticism immediately spilled into religious and moral discourse about what can rightly be done to the human body as God's creation.
In this period, critics of state institutions increasingly framed their moral discontent with the government in what they considered to be "Islamic" terms. Professionals, including medical physicians, many of whom were members of the Muslim Brotherhood that came to dominate the Egyptian Medical Syndicate in the 1980s, called for a return to religious ideals. While it might have been clear to Dr. Ghoneim of Mansoura in the mid-1970s that the primary battle to be fought was against disease, particularly that which is wrought by endemic parasitic infection among the rural poor, rural disease was much less the priority of elite physicians a decade later and is still less of a priority today. In the first decade and a half of transplant medicine, many Egyptian doctors began to identify other battles to be waged: against the privatization of health care, the commodification of bodies, rampant corruption, government irresponsibility, and godlessness. Who can patients trust, given the ample restrictions on political freedoms, the strained relations between religious and state authorities, and the fact that there has been no tradition of patients' rights and no elaborate system of consent procurement?
On Dialysis, in the Wash
Ragia lay on a narrow bed tethered to her dialysis machine. She was now completely blind as a result of her diabetes, which had also devastated her kidneys. Anticipating meeting her again, I walked hesitantly down the hall of the public hospital in the Nile Delta city of Tanta and then fidgeted nervously at the entryway of the dimly lit hospital room. The overhead fluorescent lights flickered arhythmically, and the smell of disinfectant mixed with the human blood moving between the dialysis machines and the patients, was overpowering. The sounds of periodic beeps and swishes of the dialysis machines rarely, if ever, synchronized with the patients' restless movements. The patients lay in rows, each hooked up to a machine.
The Egyptian colloquial word for dialysis is ghasil-kalawy (kidney washing) or ghasil al-damm (washing blood). Ghasil, in everyday parlance, means "laundry." Patients referring to their dialysis sessions said that they came to "wash" or that the doctors "washed" them. When I first met Salih, a forty-year old army retiree whose wife accompanied him on the two-hour trip from their rural village to the dialysis unit, his wife, unaccustomed to hearing the city dialect, asked me to repeat everything I said a number of times. Salih affectionately nudged his wife and joked, "It's true that I need to do washing [i.e., dialysis, ghasil], but I think she needs ear washing [ghasil al-widan]!" A younger patient, Ahmad, told me, amusedly, that his children at home learned that their father did "washing" at the hospital and that their mother did the washing at home. As the patients were well aware, the dialysis sessions did not treat their kidney disease or restore their kidney function. Dialysis, a life-sustaining treatment, keeps the diagnosis of end-stage kidney failure from being a death sentence by filtering the toxins in blood that malfunctioning kidneys fail to remove.
As many patients conceived of it, "Food makes blood, and then kidneys clean the blood." Now that their kidneys had failed, machines washed their blood instead. Their toxin levels, they believed, were high not only because of their failed kidneys but also because of their toxic environment. No matter how much washing occurred, their vitality could never be fully restored, because, as they pointed out, the food and water that remade their blood were polluted, just as the blood transfusions they needed might be contaminated. Further, many patients realized that the more time they spent on dialysis, the sicker they were getting, and the less they would benefit from a kidney transplant. As one patient put it, "You wash and wash [undergo dialysis], and just like when you wash your galabiyya and it gets frayed and threadbare, the same with the body, it gets worn out from so much washing."
Conscious that they were reliant on dialysis machines for their very survival, patients were also cognizant of their vulnerability to the machines' shortcomings. The dialysis sessions required humans-underpaid and often unreliable-to check, carry, transport, clean, and operate the machines. And dialysis machines relied on hospital and state infrastructure for electric power. In the Egyptian delta provinces of Gharbiyya and elsewhere, patients were vulnerable to the state's irregular power supply and to regular blackouts. Even more frustrating were the more frequent brownouts, periods when the voltage dropped low, threatening the operation of the machines' microprocessing units. The dialysis machines would often let out sharp beeps in response to the drops in voltage. The patients would lift their heavy heads in alarm; the fuzzy picture on a black-and-white television set, which at times emanated melodious Qur?anic recitation and at other times depicted images of war in Iraq, would switch to static. The nurses would run to the dialysis machines and punch buttons until the beeping stopped.
Trying to brace myself for what I might find inside, I had come to the habit of beginning my work in the dialysis unit by counting whose shoes were lying outside the door, trying to anticipate who might be missing by yet another death. Catching sight of Ragia's shoes, then Ragia, I walked in and took my place by her side. I opened my notebook, and she began to speak.
Ragia told me with tears streaming down her face that more painful than the dialysis was the fact that, after years of living in blindness, she had forgotten the face of her seven-year-old daughter. Her husband, at her side, consoled her, saying that he would give her his kidney, and even his eyes, to see her not suffer. They did not have the same blood type, though, foreclosing the possibility of a transplant. Ragia said that in any case she could not bear to see him undergo a major operation for her and that they needed to save all of their resources to focus on their only daughter, who was recently diagnosed with the same diabetes afflicting her mother.
Unlike Ragia, most patients in the public hospital dialysis ward in Tanta did not have family members readily offering them pieces of their bodies. Most of Egypt's poor could not afford to consider transplantation as a possibility. In any case, many patients were not convinced that a transplant would result in more benefit than harm-considering the financial costs, the sacrifice of the kidney donor, and how their lives might or might not turn out posttransplant. They continued to endure difficult and, at times, unreliable treatment and to manage the symptoms of chronic kidney failure and the side effects of medications and hemodialysis, including dietary restrictions and unpredictable episodes of sharp pain, dizziness, weakness, nausea, muscle cramps, and fatigue.
Another young woman, Muna, also fidgeted restlessly in her bed. She, too, had a young daughter to care for. Her husband, tiring of the expenses of dialysis treatment and Muna's inability to conceive and give birth to a son, had left her, a fate not uncommon to women on dialysis. And she had tried-against her doctor's warnings-to bear another child, but the strain of the pregnancy resulted in a miscarriage, worsening her kidney function and precipitating the dissolution of her marriage. In a tired and hoarse whisper, she explained to me that there was no one who would gift her a kidney. "Anyway," she sighed, "one cannot give a part of the body away, since the whole body belongs to God." Then she straightened and forced a smile, telling me that advances in science happened every day. "Soon doctors may be able to clone a kidney from [my own] cells." Pointing to the tubes connecting her frail arms to the bright blue dialysis machine, she said, "I'll be honest with you. It is this hope that keeps me going. It is this hope that brings me here each day."
At their simplest, accounts of scientific progress assert that the advance of science and technology necessarily improves the lives of people around the globe. Even poor rural patients like Muna, in an understaffed and resource-poor public hospital, live on the hope that advances in scientific knowledge will directly improve their quality of life. Yet anthropologists and postcolonial scholars have demonstrated that the increased sophistication and circulation of science and technology have generally continued to privilege those already most advantaged (Mitchell 2002; Harding 2006). Skills, techniques, expertise, and pharmaceuticals generally tend to follow the flows of global capital. In the visceral case of organ transplantation, the actual kidneys and other body parts, too, tend to move "from poor to rich, from black and brown to white, and from female to male"(Scheper-Hughes 2000: 193).
The majority of dialysis patients with whom I spoke told me that they refused the premise of organ transplantation, the idea that one could "give" a piece of one's body, that they could "take" such a thing from someone they loved or, even from someone they paid to part with an organ. "The body belongs to God," they would say. This sentiment is generally unremarkable and obvious in the context of the lives of believing Muslims who in illness turn to God more fervently. Yet it has been a sentiment that people constantly evoke and iterate in discussions of organ transplantation in Egypt. Shaykh Sha?rawi (d. 1998), a popular religious figure, first asserted this statement as a challenge to the biomedical treatment of body parts as interchangeable commodities. With each utterance, patients, doctors, and religious scholars with whom I spoke imparted new meanings to the idea that the body is divine property (inna al-jasad milk allah).
Something deeply disturbing about the prospects of organ transplantation precluded Ragia, Muna, and other patients from considering it as a viable treatment. Muna's hope focused on stem cells and the future possibility of a technique in bodily regeneration. This position challenges doctors' assumptions that their patients' refusals of organ transplantation are due to "fatalism," a fear of human intervention in a divine plan, or anxieties about technological intervention in "natural processes." At the time of my fieldwork, a certain irony unfolded: In the United States, stem cell research, the very hope that Muna said kept her going each day, had provoked major ethical and political discussion, while organ donation in dominant North American discourse continued to be depicted as an act of altruism, that well-known "gift of life." In contrast, most of the Egyptian patients with whom I spoke felt uneasy about organ transplantation, but they had no such qualms about ideas of "therapeutically cloning" kidneys or about "artificial kidneys" in the form of the dialysis machines that were sustaining them. The positions of these Egyptians may initially seem strange, considering their avowals that "the body belongs to God." Why did organ procurement from another human trouble the premise of the body as divine property, whereas the therapeutic cloning of kidneys, or their replacement via a dialysis machine, did not?
I soon learned that transplantation did not appear beneficial as a medical "solution," because patients often resisted the idea of turning to a family member as a potential kidney donor. Most patients did not experience their illnesses as isolated in their kidneys. Neither did they conceive of their body parts as interchangeable with those of others. Many patients did not accept what medical expertise has defined as a "tolerable risk," that is, the opening up of a healthy human donor and extracting a vital organ. They expressed their frustration at being vulnerable to the stresses of daily life, to the mismanagement of toxic waste, to the dumping of pesticides on agricultural land, and to a generally polluted environment. The polluted cities and farmland and their mismanagement through corruption and exploitation profoundly influenced patients' ethical dispositions toward their treatment options. They saw themselves as the most damaged cases in a place where everyone was vulnerable to organ failure, including would-be donors.
Dialysis units began proliferating across the country in the 1990s, expanding into smaller cities in the provinces, often in the form of private clinics. For most of the patients I interviewed, the mushrooming of dialysis units, each one teeming with people diagnosed with end-stage kidney failure, was not read simply as progress in medical treatment or as improvement in medical access. Both patients and experts interpreted the rise in diagnoses of kidney failure as an indication of increased vulnerability to toxicity and exploitation. Many editorials in the state-owned newspapers (Al-Ahram and Al-Akhbar) as well as in opposition newspapers consistently asserted the links between pollution and kidney disease. Investigative reporters on popular television shows linked laboratory results of unclean water in particular urban quarters, slums, and villages with high rates of kidney and liver disease. Witnessing the affliction of entire villages with kidney disease, their agricultural lands poisoned by toxic waste, chemical fertilizers, and bungled sewage draining, they argued that the Egyptian state not only did not care for its citizens but also negligently left them exposed to toxins and vulnerable to substandard medical practice.
Indeed, despite a mandate for universal health coverage, general government expenditure on health under President Mubarak amounted to 2 percent of total GDP (Fouad 2005; WHO 2007). Under Mubarak's regime, the Egyptian government contributed only 38 percent of the country's total health expenditure; the rest came from private sources, including out-of-pocket expenses paid by the poor (Fouad 2005; WHO 2007). The percentage of cost borne by patients out of pocket has only increased in recent years, with most Egyptians scraping together what little they have to pay for outpatient care at private clinics. As opposition party leaders complain, government resources are spent paying off foreign debts and interest on the financing of imports, upon which the Egyptian economy has been made to depend.
As I will detail more extensively in chapter 3, in the 1950s patients in public teaching hospitals served as the unwitting experimental subjects of Egyptian ophthalmologists' cornea transplants. In contrast, at the time of my fieldwork, beginning in the 2000s, patients at public facilities were vigilant about medical mistreatment; they were informed by national television and other media about religious debates in medical practices. Many were acquainted with the criticism expressed in opposition-party platforms regarding the shortcomings of the Mubarak regime. Patients were particularly suspicious of eye and kidney specialists because of allegations of "eye theft" from the morgue and reports of the vibrant market in human kidneys. It was well known that Egyptian doctors participated in these practices, and, as noted by the opposition-party newspapers, they were rarely held accountable for transgressions.
The dialysis patients whom I interviewed, even those who needed to embark on painful and onerous travel from the countryside to reach a clinic, learned to tolerate the burdensome regime of dialysis treatments in order to survive without recourse to a new kidney. Many were aware of the reported scandals in medical malpractice and of their particular vulnerability in terms of their dependence on surgery, dialysis, blood transfusion, and pharmaceuticals. Understanding that organ failure is a terminal illness that can be offset by procuring a "new" organ, some patients turned to their family members as resources. There was a lucky minority of patients with family members willing and medically eligible to donate kidneys to them, and with the resources to go through with the operation and follow-up treatment. Others felt the need to protect family members, particularly those most vulnerable. Many patients described themselves as undergoing a trial from God, during which they would remain steadfast in faith. They struggled with whatever resources were available and worked to cultivate dispositions of acceptance of God's will for the suffering that they could not end. In this context, patients extolled the virtues of cultivating steadfastness (al-sabr) during God's trials (al-ibtila?). Reliance on God and acceptance of divine will (al-tawakkul) are far from a passive or fatalistic attitude. Patients did not irrationally refuse positive change; instead, they conscientiously and rigorously trained themselves to accept God's will in regard to that which they could not change without unacceptable costs.
In some cases, people eventually turned to an eager supply of organ sellers in Cairo who were ready to part with their kidneys for fast cash. Young patients often passively accepted the decisions of their parents, who sacrificed significant resources and exerted tremendous effort to procure "new kidneys" for them. In desperation, parents resorted to what they themselves called "the unsavory option" of buying a kidney from a desperate seller in Cairo in order to see their sick sons and daughters live, grow, marry, and have children of their own.
Just a Little Bit of Sight
"Come here, my daughter. What is this you are saying? I cannot see you, but God has blessed me with the sound of your voice."
At the time of my fieldwork, cornea transplant operations were hard to come by. Yet unlike kidney transplants, they were highly sought after by the patients who needed them. At the public eye hospital in Tanta, the phrase I heard most often among poor rural in-patients in the Eye Ward was: "I just want a little bit of vision-just enough to see and work throughout the day so that I am not a burden to others." Patients called for a health care system that would make corneas available to all those who were blinded by cornea opacity. Even though cornea transplantation was looked upon favorably, here too patients and doctors blamed a corrupt government and dysfunctional political system for preventing their access to good treatment.
The elderly rural patients whom I saw consistently thanked God for what little they had left of their vision. They told me that they sought medical treatment not for a cure, not to restore their vision, and not because they felt ungrateful for what they had; what brought them in was their need to "see a tiny bit more" so that they could be of use to their family members. One older woman pressed her creased thumb and index finger together tightly to illustrate to me the small amount of vision with which she would be fully content. I observed several adamant older patients refuse to undergo surgery, out of a refusal to spend scarce family resources on themselves. A full restoration of vision seemed to lie beyond the imagination of many elderly patients I saw, and, in any case, they wagered that it would not be worth the cost to others and the potential risks to themselves.
In contrast, cornea opacity patients who described themselves as young (shabab), often meaning that they had yet to be married and start their own families, expressed frustration at their conditions and had higher expectations of their access to basic medical provisions. For example, ?Aziz, a young lawyer and cornea opacity patient, stressed that people with eye diseases in Egypt are in a particularly critical state: "Eye disease is very important to study, because there are a lot of Egyptians who suffer from it. And it's not like the kidney that a dad can give to his son, because God gave us two kidneys. With vision, you can't live without it. It is the whole life and soul. The kidney-it would be bearable to be sick in that, but vision, light, eyes ... The eyes are the windows of the soul [al-?ayn nafizat al-ruh]."
I met Muhammad, a young man of twenty-five, who was also "searching" for a cornea at Cairo's Maghraby Eye Hospital, a large private eye care center that has an outreach and charitable wing for the poor. He was one of six siblings, five of whom suffered from the same genetic cornea opacity condition, which he attributed to the close genetic relationship of his parents as first cousins. He and his four sisters had spent the last decade trying to find the means to undergo cornea operations to improve their plight. As Muhammad narrated to me:
When I was born I could see well. This happened to me in middle school. It became a real problem, and my vision got worse and worse. By the time I was thirteen, I had to drop out of school because I could no longer see. All my classmates now are pharmacists and doctors [highly esteemed professionals], and I swear they were not that smart, not as good in school as I was. But because of this cornea condition, I couldn't see, and so I couldn't continue with my studies. This gets me emotionally upset to think about, because I was very intelligent in school, and I could have been anything. But I had to drop out [when I lost my vision]....
This has been very upsetting emotionally to be young and to have to go through all of this.... I have gone to about ten doctors, trying to look for a cornea. Each time the exam is about 100 £E, and they keep saying that it will be thousands of pounds for the [cornea transplant] operation....
This could break someone, being young and not finding a way to live. I became one of the old and destitute; I worked sweeping the streets. But I should have had my whole life in front of me.
Muhammad appealed to the ideals of state welfare and the idea that just as citizens sought to be productive, so should the state care for them. Social mobility through education, however difficult in Egypt, was never even a possibility for him. And with corneas available only in private clinics at high costs, Muhammad's lack of access to what he saw as a basic health provision infuriated him. Hoping that my record of his narrative might raise awareness to his plight, Muhammad continued:
I want you to write all of this. And I am happy that my name is on it. I am not ashamed. People should know that we are young and we had everything in front of us. We want to be productive like everyone else; I want to get married and have children. I want to be able to make my [future] children something good, educate them, so that they can be engineers or doctors. Imagine someone who is disabled and can no longer do anything. No productivity. The eye is the most important thing in the body. If your eye all of a sudden went out, you wouldn't be able to function at all.
When the doctor saw my eyes, he started to cry. I swear to God, he felt so bad because I am so young, and I had my whole life in front of me. But what can we do? You go to the public hospital, and they say there are no corneas. They say wait for years until the bank opens, until your turn comes, for years. I can't wait for this. This happens daily; you should see all the young people there, all the children and women. It is unconscionable [haram] to leave us like this.
Look at us; we are six in the family. Where am I going to get all this money [for private operations] for my sisters? How can I myself afford to live, let alone support others in these difficult times? I was in my youth, at the time when I am most supposed to be enjoying life. But I was so depressed, so upset, all the time. So irritable. Mentally I couldn't take it; if anyone talked to me I just wanted to scream. Anytime I tried to move or walk I would bump into everything, and I felt horrible.
As for me and my siblings, the longer we wait, the worse our eyes will get. So we have to come [to the clinics to keep trying to find a cornea graft]; we can't afford to wait until the day that we are old and completely blind.
As if conjuring an image of a surviving family member reluctant to turn over the corneas of their dead, Muhammad offered matter-of-factly: "That person already died; he won't use [his cornea] anymore. The worm is going to eat it. But if he donates it, he can help someone to see. God would forgive him for all his sins in life because he helped another person."
Out of the twenty Egyptian ophthalmologists and thirty cornea opacity patients that I interviewed, all unanimously agreed on the clear benefits of cornea grafting. They all argued that the rights of the living should supersede the rights of the dead. They differed on the best means of procuring the grafts, but they all agreed in principle that cornea donation is a necessary and commendable act. Cornea opacity patients and ophthalmologists alike were infuriated that public discussions about transplantation (naql al-?ada?) had conflated such widely different issues: the procurement of an outer tissue after death, they argued, is completely different from the extraction of a vital organ from the living, with all its attending problems involving exploitation, immune suppression, and black markets.
Dr. Mustafa, for instance, an ophthalmologist at a private eye hospital, complained to me that the only reason why people had suddenly become so excited and upset about cornea grafting in the 1990s is that they had confused it with the issue of kidney transplantation. Like other ophthalmologists, Dr. Mustafa argued that the cornea is so materially slight that no one should or can claim emotional attachment to it, especially when there are desperate people whose lives would be radically improved with a cornea graft. Shaking his head, he told me:
It is just nonsense that people have confused this with the issue of kidneys and markets. People are afraid of organ theft, and they are right. Terrible things really are happening in that respect!
But the cornea-this is totally different. It is not an organ. It is nothing, completely immaterial, it will disintegrate in a matter of days. It is only taken after death, the operation is simple, low cost, and the patient's life is saved. It is only taken after death, so there is no market for people selling their corneas.
It is not like the kidney recipient, who will have to spend the rest of his life on immunosuppressive drugs. The patient will be fine and will be able to see right after the operation. We have had great success rates with this. Unfortunately, people don't understand this. It evolved into a discussion of what is haram. But it is not like a kidney for sale or something.
Given the material insignificance of the cornea, Dr. Mustafa viewed discussions about donors' consent and patients' rights to be inapplicable and impractical to cornea grafting. Poor patients like Muhammad only suffered, he suggested, while policy makers, religious scholars, and legislators took the luxury of debating abstract questions about the ethics of removing body parts from the dead or living, which has nothing to do with the practical matters of cornea grafting.
Notably, all of Dr. Mustafa's arguments for cornea transplantation implicitly argue against the transplantation of solid internal organs. He resented the debates around kidney transplantation and the black market and its attendant corruption for having instigated a national debate about cornea transfer and eye banking. Thus, while the idea that "the body belongs to God" came to stand in as a challenge to the transplantation of body parts, the statement is not as clear-cut as it seems.
The key issues and nuances that have shaped whether and how transplantation is accessed have been missed in legislative, jurisprudential, and bioethical debates that have ignored the direct experiences of patients when addressing the transfer of tissues and organs from one body to another. Patients' experiences tell us that the malfunction of different body parts can have different cultural associations and consequences. Different parts of the body necessitate different methods of procurement, and the surgery and follow-up treatment of transplantation can involve varying degrees of complication. While all patients agreed that their bodies were not their own property, how exactly the body belongs to God is subject to continual reinterpretation and resignification with each bodily intervention.
Transplanting with Trepidation
Medical experts have differing opinions about whether a market in body parts is an inevitable outcome of organ transplantation and whether such marketing can be effectively stopped. As with patients, they anxiously wonder: is the risk of surgery and extraction of a vital organ (a kidney) from a living, healthy donor acceptable and justifiable? What counts as true "consent" for kidney donation, given the pressures of familial relations, discourses about altruism and sacrifice, and economic desperation and promises of "fast cash"?
Dr. Walid, a young nephrologist who had carried out kidney transplants in Cairo for thirteen years, told me that morally, legally, and ethically he was quite confused on this issue and that he was not sure if his reservations were of a religious nature. He told me, "Of the specialists who should have convinced me [about organ transplantation]-whether scientific or religious-no one has convinced me either way. I feel hesitant about this point. Maybe it is haram. Maybe not. If I felt for sure that it was haram, I would leave it at once."
Dr. Walid's ambivalence rested on his inability to assess whether organ transplantation brought more benefit than harm to Egyptian society. Many physicians and patients with whom I spoke reasoned that because there is harm to the donor and no clear or guaranteed benefit to the recipient, then this practice must be haram. But the questions then became: how is "benefit" to be assessed, by what criteria, and by whom? Dr. Walid went on to tell me: "I am not a religious scholar, but I think ... I think the One who creates [bodies] is the One who owns [them]." He began with this well-known religious precept but then asserted that he was not convinced that just because God owns our bodies and we will return to God in death, this religious tenet necessarily precludes the permissibility of particular medical practices such as kidney transplantation.
Dr. Farida, a nephropathologist at a public facility, was a member of the pioneering medical teams that carried out the first kidney transplants in the 1970s. She had since worked on thousands of kidney failure cases in which patients received grafts from family members or unrelated donors. In our interview, she told me with certitude that she herself would never consider undergoing a transplant. "Why would I be afraid?" she asked. "If I were dying of kidney failure, I would return my body to God, who created it in the first place." Upon my further questioning, she conceded that she would certainly consider donating a kidney to one of her children if they were ever in need. But she would never think of receiving one.
For some physicians with whom I spoke, such as Dr. Ghoneim of Mansoura, biomedicine's ethical imperative to "save lives" was universal and applicable to all situations. For others, the issue was less clear. Their ambivalence toward organ transplantation in particular marked a departure from the role that the Egyptian doctors had generally taken in accommodating biomedical practice to Egyptian life. Physicians have historically played a major part in maintaining biomedicine's social and cultural authority in Egypt as a "universal science." In other societies that are heirs to complex textual traditions, such as those in China and India, postcolonial nationalists borrowed from modern institutions to systematize "alternative" medical traditions. In Maoist China, this has been traditional Chinese medicine (Farquhar 1994; Zhan 2001; Scheid 2002), whereas postcolonial India developed what has become known as Ayurvedic medicine as a sign of national culture (Burgel 1976; Leslie 1976; Gran 1979; Langford 2002). Throughout the Arab world there has been no such modernization of indigenous healing practices, even if other medical and healing traditions continue to exist (el-Aswad 1987; Watson 1992; Early 1993; Morsy 1993; Inhorn 2003; Sholkamy and Ghannam 2004). Muslim reformers from the late nineteenth century to the present have argued that modern science, including biomedicine, is "universal," stressing its continuity with the knowledge produced by medieval Muslim scientists. In the case of Egypt, biomedicine is perceived as the national medicine, and in official nationalist discourse it is the only true and appropriate means by which one can act responsibly toward one's own body. In Egypt the major issues in biomedical debates are not about the legitimacy of biomedicine itself but rather about the ethics of its application.
It became evident, in the course of my fieldwork, that an ideal type of trustworthy Egyptian physician, the "doctor of confidence," has been largely responsible for maintaining this biomedical authority. The doctor of confidence is entrusted to adapt what is held to be a "universal science" to the Egyptian context. This figure, often described as someone who is "close to God" (?arif rabbina), is one who upholds "Egyptian" and religious values and, through his or her high ethical and scientific standards, decides which medical practices are to be accepted and which are to be filtered out. Dr. Mohamed Ghoneim, the surgeon who performed the first kidney transplant in Mansoura in 1976, is perhaps one of the best examples of the doctor of confidence and is often described by fellow Egyptians as such. He is known throughout Egypt as an exemplary medical physician. Dr. Ghoneim successfully accommodated biomedical treatment to the needs of his local rural population rather than merely reproducing the medical practice of Western countries, where he had undergone specialized training. Ghoneim proved his status in the international realm of urology and urological surgery through numerous publications in medical journals in the United States and Europe. As the national narrative goes, Ghoneim was never seduced by the potentials of power and fame abroad; his goals were to improve medicine in "his country." His "homeland" (balad) refers not only to Egypt but also to his provincial home city of Mansoura. Ghoneim gained tremendous moral capital throughout Egypt both for having reached a high stature in medical science and for not forgetting the rural poor. Throughout the eastern delta provinces, inhabitants thank God that his heart and his surgical skills remained in Mansoura. As we will see in chapter 2, the idea of a "Muslim doctor of confidence" (al-tabib al-muslim dhul-thiqa), someone who would practice medicine within a specifically Islamic ethical framework, is offered in contemporary fatwas as the final authority in bioethical conundrums.
At the same time, mistrust in biomedicine is pervasive; corruption and greed in public and private medical institutions are rampant; and medical malpractice and exploitation of vulnerable patients remain largely unaccounted for. Though several other well-respected doctors, motivated by Dr. Ghoneim's wider goal to serve poor rural patients, also led Egypt to excel in kidney transplants, still others profited in private practice by turning a blind eye to the obvious buying and selling of the organs that they were transplanting, yielding uneven surgical results. This has led many of their colleagues and the general public to decry organ transplantation as haram and to question the authority of biomedical practitioners.
Caught between a dominant religious discourse that now pervades the medical profession and the sobering realities of exploitation and an informal market in organs that has become common in Cairo's public and private hospitals, the next generation of physicians, those who went into medicine under the influence of inspiring, yet intimidating, figures like Ghoneim, have grown unconfident. Most doctors that I interviewed nervously eyed my pen and notebook in response to my questions and claimed that they did not want to "talk politics." These physicians have avoided sensitive political issues, like organ transplantation. The debate around organ transplantation has further split medical professionals who were already divided. Those doctors who have argued that organ transplantation is wrong "because the body belongs to God" could be dismissed as "extremists" and suspected of affiliations with political Islamist organizations that are critical of the government. On the other hand, those who have been involved with transplantation could be suspected of participating in irresponsible and corrupt practices such as the black market in organs.
While trust in biomedical practices still hinges on the doctor of confidence, since the 1990s in particular, people everywhere feel that current conditions have made it nearly impossible for doctors to "do good" for their countries. Medical education is a case in point. Though medicine has remained one of the most prestigious specialties in Egypt, medical education has come under fire as a broken and corrupt system that leads to a broken and corrupt healthcare industry. Although the doors to higher education were theoretically open to the poor under Nasser's regime, by the 1990s sustaining a discourse of equal opportunity was much harder. At one time, a nationalist ideal held that doctors could come out of poor classes and, in turn, do good to help the poor. With the concomitant privatization of medical education and medical services, it has been harder to maintain the notion that doctors are those who want to serve the poor and benefit their country. Coveted medical positions and clinics have even become inherited, passed from father to son or daughter. An agitated opposition party press often fans the flames of these discussions by providing detailed accounts of cases in which doctors' primary goal appears to benefit financially, and often at the expense of the poor.
It is true that the medical faculty's official salaries are so low that to survive they depend on the fees that they accrue in their private clinics, and, in some cases, by offering private medical-school lessons. Some of these professors offer underground anatomy lessons in their homes, teaching on cadavers illegally obtained, because there are so few corpses per student in Kasr el Aini's main lecture hall. Others in the medical faculty have been so overburdened by other commitments that they do not show up to teach the students, and they have no financial incentive to treat the patients in the public teaching hospitals. The official income of medical faculty comes from the Ministry of Education rather than the Ministry of Health, and thus their low salaries are fixed by the lectures they give in the medical school; the number of patients they attend to (or not) in the adjacent teaching hospitals do not bring any increase in their pay. Some residents have accused their senior physicians of refusing to teach them certain new procedures in the public facilities so as to maintain a monopoly on the procedures in their own private clinics. As a result, many of the extremely poor patients I met raised money to afford a visit with a physician at a private outpatient clinic rather than risk mistreatment in public facilities (see also Kamal 2004). Ironically, in many of these cases, the physicians who had the private outpatient clinics were the same physicians who worked in the public facilities.
Diminishing confidence in physicians, wrought by these structural factors in public and private medical institutions, has extended to outright charges of corruption. The public dispute around organ transplantation that has polarized its potential benefits and harms seems to have exacerbated the polarized potentials of biomedicine itself. Scandals about a black market in human organs and, even worse, about physicians in league with middle men convicted of organ theft from unwitting patients have occupied the press and sullied the claims that organ transplantation is simply a life-saving procedure. Take, for instance, the 1998 book written by the journalist ?Abd al-Hamid al-?Irqsusi, titled Anqadhuna ... fishash wa kalawi al-Misriyin lil-biy?! (Rescue Us ... Livers and Kidneys of Egyptians for Sale!) (al-?Irqsusi 1998). A young doctor wrote the preface to this piece, which extolled six ideal virtues of the physician: compassion, love, trust, confidence, self-sacrifice, and ethics. He asked rhetorically whether these virtues are still relevant to doctors in Egypt today, implying that doctors' participation in a black market in human body parts has forever tarnished the medical profession, which was once seen as the very moral fabric of the nation.
The virtues of the doctor of confidence in resolving irreconcilabilities between biomedical science and "Egyptian values" can no longer be counted on in assessing the appropriateness of organ transplantation. Physicians have been deeply ambivalent about the ethics of transplantation, because they have negotiated their multiple subject positions as experts, as family members, as potential patients themselves vulnerable to illness, and as religious devotees. This has led to a widening of the debate among religious scholars, who also are wondering: is organ transplantation suitable to Egyptian needs, or does it carry more potential harm than benefit?
From an Islamic Framework?
Shaykh ?Amr, a young religious scholar whom I first met and observed at al-Azhar University, was a figure who struggled daily with contestations over Islamic authority. He was part of a small elite dedicated to reviving the "traditional Islamic curriculum" (al-manhaj al-Islami). He was usually at the Azhar mosque in Old Cairo by sunrise, where he began his workday by sitting cross-legged on the carpeted floor surrounded by young students, male and female, whom he would ask to read aloud from classical texts of jurisprudence, classical Arabic grammar, or Sufi philosophy of worship, intermittently adding his explication and interpretation. The students explained to me that these are the classical texts that require a shaykh fattah, a scholar who can "open" the meaning of the texts in a small face-to-face setting, something that cannot be achieved through the "modern" curriculum established in the secularized and nationalized lecture halls of al-Azhar University.
Shaykh ?Amr was able to articulate the dominant views of the traditionalist Azhar scholars and present them in a way that was accessible to those foreign to that education. For this reason, I attended several of his classes during the course of my fieldwork and listened attentively while he captured his audience by stressing the value of regaining a sense of the inner beauty and wisdom of the Muslim scholarly traditions. Occasionally street beggars would wander into the lesson and interrupt with an outburst, and Shaykh ?Amr would calm them with a litany of blessings and direct them to one of the mosque caretakers responsible for charitable cases. He would severely chastise any student who exhibited annoyance at the interruptions of the beggars, reminding them of their duties of acting out of compassion and patience toward those less fortunate.
Always at least a half a dozen students vied for Shaykh ?Amr's attention after the lesson. After several days of unsuccessfully attempting to make my way through them, Shaykh ?Amr saw that I was trying to approach him. He brushed the more assertive students aside and beckoned me so that I might come forth and ask my question.
"Organ transplantation?" Upon hearing me utter these two words, he nodded seriously. This was a question that had become one of those "contemporary issues" (qadaya mu'asara) about which all the students and scholars at al-Azhar were well-versed and opinionated. I was curious about how Shaykh ?Amr would respond, for he constantly cautioned against those "hard-headed" elements of Muslim society who feel as if they have the right to spout religious opinions without proper training or scholarship. He had harsh words for those who think of Islam as rigid and inflexible. He lectured constantly about the genius of the Islamic jurisprudential tradition, which looks at every case from several angles to assess the utmost spiritual benefit for the community. He pointed out that one of the bases of Islamic jurisprudence is that any act is assumed to be halal (permissible) unless proven otherwise by revealed texts or legal reasoning, and he lamented that "ignorant extremists" operate from the reverse premise: assuming that all is haram unless they can find evidence of permission in the Qur?an, in the traditions of the Prophet, or in those of the early Muslim community.
Out of modesty, Shaykh ?Amr would never look directly at me, and yet I still felt his piercing gaze somehow, holding me to high expectations: "You will present this research abroad. But you will have to study it carefully first, gathering all the different perspectives. I will not prejudice you now with my opinion. I want you to read all the texts, to hear from everyone." He then jotted down a list of citations for me to pursue.
I followed Shaykh ?Amr's suggestions and read many of the scholarly texts, during which time I continued to research this issue in medical clinics among patients and doctors in the Nile Delta cities of Tanta and Mansoura. I also intermittently attended some of Shaykh ?Amr's classes on the days that I was in Cairo. More than a year after this initial conversation with him, I approached him and again posed my question. I was still curious to know what he thought and whether he would tell me. He paused in contemplation. Then he said, "Your topic necessarily proposes a philosophical question about the ontology of the body and its relationship to its Creator.... So you must begin your work with a discussion of basic philosophical questions. When you see this, you will have the right framework to understand everything."
Taking out a pen and pad from the upper pocket of his galabiyya (an ankle-length dress shirt), he drew a circle with a dot in the center: "This dot and the circle represent the relationship of the human being with his Creator. This is the relationship of 'abudiyya [slavery/worship/utter submission]. Everything a human does is within the bounds of this relationship."
By then I had attended enough of his lessons and had researched this topic long enough to understand what Shaykh ?Amr meant. The specifics of organ transplantation in and of themselves were hardly relevant to Shaykh ?Amr; more pressing for him was what this medical practice represented more broadly and how it interfaced with a larger "Islamic worldview" (manzur islami). Shaykh ?Amr was implicitly complicating the logic of proponents of organ transplantation, who have argued that it is permissible in Islam to donate or receive a human body part because it "saves lives" and therefore fulfills criteria for maslaha-the attainment of overall social benefit, or welfare. Maslaha is a tool of Islamic jurisprudence that has served as a cornerstone for modernist scholars who seek to bring various modern practices into accord with Islamic thought, arguing that anything that serves the greater social community is therefore permissible in Islam (Krawietz 1997; Skovgaard-Petersen 1997; Dallal 2000; Johnston 2004). Yet for Muslims, Shaykh ?Amr stressed, the premise and end of maslaha is not the human being. It is the human-Creator relationship. Thus, he argued that we should not ask if something serves our interests without also asking if it serves our relationship with God.
Shaykh ?Amr explained that the main challenge is to ascertain which aspects of modern knowledge are useful and coincide with "the Islamic framework" (al-itar al-islami). He asked whether organ transplantation necessarily portends a different ontological understanding of the human body, one that lies outside an Islamic framework. Does the act of donating or receiving a body part necessitate a particular attitude toward one's relationship with God? Does organ transplantation, for example, necessitate an understanding of the body as a mere mass of parts? Or can organ transplantation be used merely as a technique that can be reworked and resignified, given different meanings depending on its various applications and contexts?
Shaykh ?Amr's well-reasoned questions seem worlds away from the predicaments of end-stage kidney-failure patients in the Tanta dialysis wards. He believed that if we were all certain about our place within God's plans of Creation and servitude, then none of these "contemporary" questions would be ethically vexing. Yet, among the Egyptian public, doctors, and patients, and especially among interlocutors in the Egyptian media, questions about organ transplantation have been quite troubling. Religious discourse in Egypt is marked by schisms in understanding issues of moral responsibility, the acceptance of God's will, and, as detailed in the next chapter, the role of the dead body. But scholars like Shaykh ?Amr are in consensus that one must, in any case, assess to what extent any given procedure is beneficial when considering its ethics. For this assessment they have turned to the doctors. But the doctors too have been in disagreement among themselves..
Biomedical authority remains the national medicine of Egypt; no other medical traditions are given credence in dominant state discourses related to health. Similarly, religion is the code of ethics that Egyptians say they turn to when in doubt about a particular practice. But this agreement on the source of knowledge about bodies and ethics has not led to uniform positions on the human body or to a singular form of moral reasoning. Religious scholars, medical practitioners, politicians, the media, and patients in Egypt are in disagreement over the efficacy, safety, religious permissibility, and legality of organ transplantation.
Debate continues over which field of expertise should be given the most weight and, even more fundamentally, over who qualifies as an expert. There is much discomfort with the increased (com)modification of bodies and the privatization of medicine, as well as the significant demographic change that the medical profession has undergone, now representing the interests of a wider array of social classes, religious dispositions, and geographic origins. Discourses surrounding cornea transplantation in the 1950s did not refer to Islamic reasoning or fatwas, whereas those in the 1980s with kidney transplantation did so as a matter of course. Public religious discourse in the contemporary Middle East should not be taken as a fixed measure of religious sentiment writ large (Bouzid 1998). It ebbs and flows according to the strategies and exigencies of political players, namely, the state and its critics.
In describing patients, physicians, and religious scholars who launch criticism of the state, medical authority, and the pronouncements of religious officiates, I am discussing a much broader swath of Egyptian society than Cairo's "counterpublic" (Hirschkind 2006). With this term, anthropologist Charles Hirschkind refers to people in Egypt associated with social movements galvanized by preachers who are outside state official positions and who promote greater religiosity in everyday life through the circulation of decentralized media, such as cassette sermons. Those devoted to listening to these sermons as a practice in moral edification work to cultivate dispositions that they imagine to be essentially "Islamic," contra the pressures of modernity, nationalism, and secularization (Hirschkind 2006). Many of those whose stories inform my work were also wary of falling into godlessness, but at the same time they were fully indoctrinated in the ideas of "modern progress" and felt the need for Egypt to "catch up to the West." Many questioned the relevance of Islamic authorities' pronouncements about medical science and at the same time sought confirmation that their medical decisions were in line with Muslim ethics. These are people who straddled the line between state-oriented discourses and new forms of religious revivalism; many held multiple and seemingly contradictory positions, depending on which of their many roles-as workers or patients, as family members or religious devotees-they were enacting at any given time.
At one point in my fieldwork I attended a public outreach campaign relating to eyesight at which a medical assistant harshly scolded the rural peasants for their "ignorant" beliefs about the "body belonging to God," arguing that in a matter of days bodily tissues would be eaten by worms and that it was their duty to donate the eyes of their dead for cornea transplantation. Upon my private questioning of him later, he told me that as someone who came from a humble rural background, he was completely opposed to transplantation in all forms and believed that the body, as God's creation, was not something to exchange, cut up, and meddle with. In his position in the public health campaign, however, he could engage with only one vocabulary, which I suspect he may have also partly believed.
Throughout my study, I also encountered religious scholars who might have been appointed by the state and yet who were critical of it, transplant surgeons who worried about the ethics of their practice, and patients who both trusted and mistrusted medical authority. Some people turned to the market in organs while articulating their disgust with it. Doctors poked fun at patients' fears that they might need all their body parts in the afterlife and simultaneously felt uncomfortable with the idea of parting with their own organs. Deep ambivalences seem to be intrinsic to organ transplantation wherever it is practiced, putting its medical practitioners and patients in contradictory positions (Fox and Swazey 1974; Joralemon 1995; Sharp 1995, 2006; Scheper-Hughes 1996, 2000; Lock 2002a, 2002b; Crowley-Matoka and Lock 2006). Biomedicine, as powerful and as pervasive as it has become, is never fully totalizing of our ideas about bodies, embodiment, life, and death.
And at this historical moment in Egypt, a shifting social landscape has rendered medical authority even less certain. Broad changes in economic and social policies, in rural and urban demography, and in the dramatic escalation of public religious discourse have yielded rapidly shifting social norms. Patients I spoke with often simultaneously articulated their hopes for biomedical intervention and criticism of its false promises. As forthcoming chapters detail, this plurality of patients' experiences, opinions, and perspectives is too often ignored, in part because of the assumption that there should be a singular truth in matters of religion and science. The cacophony of expert opinion also ignores the perpetuation of social inequalities through biomedical intervention. In the next chapter I explore how the impetus to locate a single moment of death and to codify a single "truth" about the human body comes up against the necessarily multiple and messy realities of bodily demise and the end of human life.
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