HUMAN BODY PARTS AS THERAPEUTIC TOOLS: CONTRADICTORY DISCOURSES AND TRANSFORMED SUBJECTIVITIES MARGARET LOCK
Over the past half-century, the development and refinement of the technology of tissue and organ transplantation have enabled us to make routine use of human bodies as therapeutic tools. Appropriation of human cadavers and body parts for medical purposes has a long history that commenced in classical Greece. This history is not a savory one—very often, vivisection of criminals or marginalized people was involved. As late as the mid-nineteenth century, in both Europe and North America, bodies obtained for medical dissection were frequently procured through foul means, and a disproportionate number were bodies of the poor or minority peoples.
It was not until the first part of the twentieth century that medical knowledge advanced sufficiently that blood could be transfused, and then, later, solid organs were transplanted, bringing about a confusion of body boundaries and mingling of body parts never before possible. Some rather crude experimentation with organ transplants in the early years revealed that body parts cannot be grafted at random and biological rules of blood and tissue typing must be adhered to faithfully. Solid organs, more often than not, are never fully accepted by recipient bodies, so that lifelong use of immunosuppressants is necessary. Despite this difficulty, organ transplants have been routinized with apparent ease and become part of the health care systems of virtually all countries in the world able to support the necessary technology. This suggests that the majority ol health care professionals and policy makers assume that making use of organs obtained from willing donors, whether living or dead at the time of procurement, is a rational, worthwhile, and relatively unproblematic endeavor----
Before the removal of organs from donors and their preparation for use as therapeutic tools can come about, the necessary technology must be in place and, furthermore, human organs have to be understood as fungible. Moreover, donors must be designated as dead prior to organ removal. I point out what seems obvious today as a reminder that it is only over the past 40 years that we
have gradually come to accept organ procurement as commonplace; during this time, for the most part, a utilitarian drive to maximize available organs has dominated any deeper examination of the issues involved.
In addition to assuring that death has indeed taken place, a tacit agreement must also exist that the body will not be violated through organ removal, and, to this end, conceptualization of organs by the medical profession as mere objects is enabling. However, organs for transplant are, by definition, alive; although objectified, they cannot be reduced to mere things, even in the minds of involved physicians, and they retain, therefore, a hybrid-like status.
Mixed metaphors associated with human organs encourage confusion about their worth. The language of medicine insists that human body parts are material entities, devoid entirely of identity whether located in donors or in recipients. However, to promote donation, organs are animated with a life force that, it is argued, can be gifted, and donor families are not discouraged from understanding donation as permitting their relatives to "live on" in the bodies of recipients. Organ donation is very often understood as creating meaning out of a senseless, accidental death through the use of a technologically mediated path to transcendence, although the enforced anonymity of donor families ensures that no earthly ties of solidarity between recipients and donor families are formed except on rare occasions.
Despite the enforced cloak of anonymity associated with donors, it has been shown on many occasions that large numbers of recipients experience a frustrated sense of obligation about the need to repay the family of the donor for the extraordinary act of benevolence that has brought them back from the brink of death. The "tyranny of the gift" has been well documented in the transplant world, but it is not merely a desire to try to settle accounts that is at work when people want to know more about the donor. It is abundantly clear that donated organs very often represent much more than mere biological body parts; the life with which they are animated is experienced by recipients as personified, an agency that manifests itself in some surprising ways and profoundly influences subjectivity.
A conversation I had a few years ago with a heart transplant surgeon was most revealing in this respect. This surgeon was responding to stories that have been circulating for some time now about a debate taking place in several or the American states as to whether prisoners on death row should have the option of donating their organs for transplant before they are put to death. The argument is that prisoners should be given the choice of making a "gift" to society just before their lives are extinguished. Perhaps those among the prisoners who are believers will even go straight to heaven.
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This surgeon was uncomfortable about the idea of organ donations made by Death Row prisoners, not so much because he was concerned about the highly questionable ethics (Can one make an "informed choice" in such circumstances?) but about receiving a heart that had been taken out of the body of a murderer. He said to me, with some embarrassment, "I wouldn't like to have a murderer's heart put into my body," then added hastily, trying to make a joke out of the situation, "I might find myself starting to change."
A good number of organ recipients worry about the gender, ethnicity, skin color, personality, and social status of their donors, and many believe that their mode of being-in-the-world is radically changed after a transplant, thanks to the power and vitality diffusing from the organ they have received. This situation leads to contradictions and confusion, even among health care professionals, it seems. Organ donation is promoted making use of the metaphor of "the gift of life" so that organs are indirectly attributed with a transcendent life force by many people involved with the transplant world. Once transplanted, however, if the recipient attributes the "life-saving" organ with animistic qualities for more than a few weeks, then he or she is severely reprimanded, even thought of as exhibiting pathology.
Interviews that I carried out in 1996 with 30 transplant recipients living in Montreal reveal that just under half are very matter-of-fact about the organs they have received. These people insist that after an interim period of a few months, they ceased to be concerned about the source of the new organ encased in their bodies and resumed their lives as best they could, unchanged in any profound way except for a daily regime of massive doses of medication. The responses of the remaining recipients were different: They produced emotionally charged accounts about their donors (about whom, in reality, they knew very little), the particular organ they had received, and often about their t rans fo rmed subj ectivity.
Forty-one-year-old Stefan Rivet falls into the first group. He is a kidney recipient, doing well when interviewed 5 years after the transplant. He says,
Rivet I heard about the donor, even though I wasn't supposed to. It was a woman between 20 and 25. She was in a car accident. You know, don't you, that you can't meet the family because the doctors think it would be too emotional? But I wrote a letter to them, it must have been a terrible time for them, and I wanted to thank them.
Loch Did you find it hard to write that letter?
Rivet. No, no, it wasn't hard for me. Like saying "thank you" to someone if they do something for you, that's just the way it was.
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Lock: Did you feel at all strange because it was a woman's kidney?
Rivet No. At first you wonder how could a female kidney work in a man. You think about it. But once the doctor tells you that it works exactly the same in men and women you don't question things any more, ft doesn't bug me. I have my kidney, and I can live, that's all you really worry about.
When I first woke up in hospital I was worried. Of course, I didn't know whose kidney it was then, all you know is that there's a strange organ in there and you hope that it works; you don't want anything to go wrong. After a while though, you adapt and you stop thinking about it, except that it's really important to take the pills. I just say now that it's my second life.
In contrast to recipients such as Stefan Rivet, many others undergo a rather dramatic transformative experience. One such was Katherine White, who first received a kidney transplant in 1982, and then, in 1994, after that kidney failed and her own liver was also in jeopardy, she received a double transplant of liver and kidney. Six months after the second surgery, she had this to say:
White: I have no idea who the donor was, all I know is that both the kidney and liver came from one person because you can't survive if they put organs from two different people into you at once—your body would never be able to deal with it. I wrote a thank-you note right away that I gave to the nurse. But they don't like you to know who it is; sometimes people feel that their child has been reborn in you and they want to make close contact. That could lead to problems. 1 still think of it as a dilferent person inside me—yes I do, still. It's not all of me, and it's not all this person either. Actually, 1 might like some contact with the donor family. . . . You know, I never liked cheese and stuff like that, and some people think I'm joking, but all of a sudden I couldn't stop eating Kraft slices—that was after the first kidney. This time around, the first thing I did was to eat chocolate. I have a craving for chocolate and now 1 eat some every day. It's driving me crazy because I'm not a chocolate fanatic. So maybe this person who gave me the liver was a chocoholic?! It's funny like that, and some of the doctors say it's the drugs that do things to you. I'm certainly moody these days. You do change whether you like il or not. I can't say that I'm the same person I was, but in a way I think that I'm a better person.
You know, sometimes I feel as if I'm pregnant, as if I'm giving birth to somebody. I don't know what it is really, but there's another life inside of me, and I'm actually storing this life, and it makes me feel fantastic. It's
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weird, I constantly think of that other person, the donor ... but I know a lot of people who receive organs don't think about the donors at all.
Awhile ago I saw a TV program about Russia and it seemed as though they were actually killing children in orphanages to take out their eyes and other organs. This disturbed me no end. I hope to God it's not really like that. My parents and my uncles all thought 1 shouldn't have a transplant, they said you can't be sure that the patient is really dead. Brain-dead is not death, they said. But I know that's not right. I had a friend a few years back who had a bad fall off a bicycle and her husband donated her organs. Once you're brain-dead that's it. Lock: What do you think happens when people die?
White: I hope I go to heaven! I don't believe in resurrection but I do believe in a heaven and hell and an in-between, you know? 1 think there's a person up there who knows that I'm carrying a part of her around with me. I always think there's somebody watching me . . . but you know, 1 don't really believe in religion. ... I really don't. In a way I wish I could have a pig's liver or kidney—it would be much simpler then.
Despite the power of medical discourse working against animation of organs by patients and the flat rejection of the possibility of any transformation in subjectivity on the part of virtually all doctors, it is clear from numerous interviews carried out independently by Leslie Sharp (1995) and me that a large number of patients in Canada and the United States believe themselves to be "reborn" after a transplant. These patients frequently form affiliations with other transplant recipients, but this newfound group identity is often accompanied by a more substantial transformation; many recipients undergo a profound change in subjectivity and report that they experience embodiment in a radically different way after a transplant.
THE GLOBALIZATION OF SUBJECTIVITY
Not all technologically advanced countries have responded in the same way to transplant technology. By far the majority of organs for transplant are procured from brain-dead bodies. In Japan, a vigorous national debate has taken place for over 30 years in which opponents to the recognition of brain death as I he end of human life have effectively blocked almost all organ transplants. Only in 1997 was it finally agreed that the bodies of brain-dead patients could be commodincd for use in transplants. Since that time, however, there have been only 17 organ procurements from brain-dead bodies. This situation has
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meant that for those relatively few patients in Japan who receive transplants, "living related organ donations" is the norm, that is, organs are usually procured from living relatives. One exception was Naka Yoshitomo, 63, a retired school principal who was the recipient of a kidney taken from a 70-year-old American brain-dead donor. The transplant took place between 60 and 70 hours after the kidney was first procured in the United States, having traveled halfway across the world and then languished in a cooler while medical professionals disputed whether it should be used. Exactly one year later, in 1996, when I interviewed him, Naka was experiencing a mild rejection of the kidney, but since that time he has done exceptionally well.
"I've become ten years younger since I had the transplant," he says, "I was on dialysis for 13 years, every Tuesday, Thursday, and Saturday afternoons and evenings."
"How did you feel about having a kidney from such an old donor?"
"My wife was opposed, partly because of the cost. But my son agreed as soon as he understood that 1 was keen." (Note that Mr. Naka thinks first about the reactions of his family and not about his own feelings.) He goes on,
1 felt really lucky to go right to the top of the list of waiting people just because I happened to be the best match. I didn't want to lose this chance— this seemed really to be a "gift of love and health" (ui to kenko no okuri-mono), finally, after all the waiting.
In the event, once the operation was completed, it took only 5 days before the kidney started to function well. In the United States, this kidney would have been thrown out as defective because of its age and the protracted time outside a human body.
One morning shortly after the operation, Naka was completely taken aback when he noticed in the street below the sounds of one of the oppressively noisy military-like vehicles used by the extreme right wing in Japan to stir up nationalistic sentiment. As it crawled back and forth outside the hospital, he gradually became aware of the message being screamed into the loudspeakers: "Bad doctors have taken part in a cover-up. Importation of defective kidneys." On and on they droned, strident and abusive. Lying in his hospital hed, shocked, Naka was plagued by serious doubts and began to believe that in his haste to get a transplant, he had done something wrong. He had been told that the chances of success for the transplant were about 80 percent, but he started to wonder whom he should believe. Time has proved the judgment of the doctors correct—but they do indeed take risks in transplanting aged kidneys into desperate Japanese patients.
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Naka and others of his compatriots who have received transplants, as well as transplant surgeons, have been labeled unpatriotic by a few of their bellicose countrymen who have strong nationalistic sentiments. Both the recognition of brain death as the end of human life and the carrying out of organ transplants making use of brain-dead donors, whether the donor is Japanese or foreign, have caused hostile reactions from the extreme Right as "unnatural" acts in which Japan should not participate. After his first shock, Naka had no trouble ignoring the hostility targeted at him and his surgeon. He reported to me that now he lives daily with thoughts about his donor:
Naka: Hopefully I will understand how he felt one day. We must change our ideas in Japan [and be more generous about donation ], and that is why 1 wrote a book about my experience.
Lock: Did you write a letter to the donors family?
Naka: Oh yes! 1 was happy to send that letter. I sent a copy of my book to UnoS (the United States United Network of Organ Sharing) as well. Now I'm working hard on cultural exchange between my hometown and our sister town in America. I go to America all the time arranging visits and events. 1 can't think of a better way to thank that family for what they did for me.
Naka firmly believes that as a result of the transplant he is able to transcend the boundaries of his former self and has become a citizen of a global community that fosters international cooperation of all kinds.
Although Naka is highly cognizant of the generosity of his donor, this is by no means always the case. Because of the anonymity that has been imposed on donors, many of whom receive nothing more than a brief note of thanks from an organ procurement agency, their altruism has gone virtually unmarked by many recipients and even by some transplant teams. On the contrary, a sense of entitlement to "spare parts" is evident among a good number of people involved with the transplant enterprise.
Ethnographic research has contributed to a growing understanding that public recognition of the indispensable part played by donors in the transplant enterprise is crucial. With increasing frequency, donors' families and organ recipients are brought together, usually at public gatherings at which donors as a group are memorialized. These encounters are not designed for the purpose o( bringing donor families together with the recipients of the organs of their relatives but rather to create a community in which both donors and recipients participate. As a result of such gatherings, family members who have already facilitated a donation may well be motivated to encourage other people in their
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circle of acquaintances to comply with organ donation should a relative of theirs become brain-dead.
To date, because donor families have been pushed into obscurity by a system that requires anonymity, there has been little incentive for them to encourage other people to do what they did; on the contrary, some families retain doubts that can linger for years as to whether they did the right thing in agreeing to donation. Only when donor families arc permitted to encounter firsthand the transformation that transplants can have on the lives of so many people will such doubts be dissipated, although even then they may continue for some people. Similarly, the misplaced idea that a few people appear to have, that organ donation is simply a matter of signing an organ donation card, will be dispelled as donor families are increasingly brought into the public domain. Signing a card is, indeed, rather easy, but it is, in the end, the families of donors who, in a state of intense shock, must agree to suppress their own overwhelming feelings of loss and disbelief and permit the procurement of organs.
REFERENCE
Sharp, Leslie. 1995. "Organ Transplantation as a Transformative Experience: Anthropological Insights into the Restructuring of the Self." Medical Anthropology Quarterly 9:357-89-
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7. Ibid.
8. Sec K. L. Nelson, ed., The Impact of Weir on American Life, New York, 1971.
9. O. E. Schoeffler and W. Gale, Esquire's Encyclopedia of Twentieth-Century Men's Fashion, New York, 1973, 24.
10. Pa/., Labyrinth of Solitude, 8.
11. "Zoot-Suiters Again on the Prowl as Navy Holds Back Sailors," Washington Post, 9 June 1943, 4.
12. Quoted in S. Menefcc, Assignment USA, New York, 1943, 24.
13. Details of the riots are taken from newspaper reports and press releases for the weeks in question, particularly from the Los Angeles Times, New York Times, Washington Post, Washington Star, and Time Magazine.
14. "Strong Measures Must be Taken Against Rioting," Los Angeles Times, 9 June 1943,
4-
15. "Zoot-Suit Fighting Spreads On the Coast," New York Times, 10 June 1943, 23.
16. Ibid.
17. "Zoot-Girls Use Knife in Attack," Los Angeles Times, 11 June 1943, 1,
18. Joan W. Moore, Homeboys: Gangs, Drugs and Prison in the Barrios of Los Angeles, Philadelphia, 1978.
19. "Zoot Suit Warfare Spreads to Pupils of Detriot Area," Washington Star, u June 1943, i-
20. Although the Detroit Race Riots of 1943 were not zoot-suit riots, nor evidently about "youth" or "delinquency," the social context in which they took place was obviously comparable. For a lengthy study of the Detroit riots, see R. Shogun and T. Craig, The Detroit Race Riot: A Study in Violence, Philadelphia and New York, 1964.
21. Paz, Labyrinth of Solitude, 9.
22. Chester Himcs, "Zoot Riots arc Race Riots," The Crisis, July 1943; reprinted in Himcs, Black on Black; Baby Sister and Selected Writings, London, 1975-
23. El Teatro Campcsino presented the first Chicano play to achieve full commercial Broadway production. The play, written by Luis Valdez and entitled Zoot Suit, was a drama documentary on the Sleepy Lagoon murder and the events leading to the Los Angeles riots. (The Sleepy Lagoon murder of August 1942 resulted in twenty-four pachucos being indicted for conspiracy to murder.)
24. Quoted in Larry Neal, "Ellison's Zoot Suit," in J. Hersey, ed., Ralph Ellison: A Collection of Critical Essays, New Jersey, 1974, 67.
25. From Larry Neal's poem "Malcolm X: An Autobiography," in L. Neal, Hoodoo Hollerin Bebop Ghosts, Washington, D.C., 1974, 9.
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