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Cancer, Ethnicity, and the Bodies of Others

[Cancer cells. Source: Wikimedia Commons] [Cancer cells. Source: Wikimedia Commons]

For Maral G. H. (2004-2016)

Cancer, I have learned, insists on the visibility of ethnic belonging.[1]

Cancer shrinks the topography of one’s world. Lives, interests, desires, abilities, relationships all recede, sometimes gradually and sometimes with blinding speed, to the contours of the body—what the body is able to sustain, what the body is capable of, what the body allows for, where the body is able to go.

Cancer narratives and discourses wage their most fierce battles against the visceral primacy of that decline. Patients and families attempt, or are urged, to “fight” cancer with the power of the mind, with will, the sheer desire to live and “beat” the disease. Stories proliferate of “warriors” who insist on living. Sometimes they “win.” Many times, tragically, they survive gruelling treatments only to succumb to an infection, an otherwise minor complication, and their battle-worn bodies can muster no more defenses. The body asserts itself again. The body, in its insistence on self-destruction, wins. We are bodies after all.

The body riddled with cancer often needs other bodies. Vital organs, or bone marrow, are transplanted from healthy bodies with the hope of regeneration, of integration, of the dominance of new healthy cells. Saving matter with matter—not with drugs, not with desire.

Cancer, Borders, and the Bodies of Others

Sometimes the giving bodies are familiar, close bodies we have known before, bodies we have loved, bodies we have touched, bodies of parents, of siblings, of children, of cousins or friends. Many times, however, those bodies are foreign, previously unknown to us, anonymous even. Bodies that may be half way across the world. Global bodies. Bodies that match our own in their cellular makeup in ways unmatched by the bodies of the women who birthed us, or even our twin siblings. Bodies that speak to our own and are instinctively, physiologically understood. A community of bodies, with their own codes, their own language, indifferent to the markers of geography or politics, of borders or groups. We stand back and let the bodies do their work.

In numbers, only thirty percent of blood cancer patients who undergo stem cell transplants (bone marrow) receive a donation from a family member. Fifty percent receive a donation from another country. Globally, therefore, you have an equal chance of finding your perfect match outside your national borders as you do inside. The border is irrelevant. Or rather, the border is equally an obstacle. In half of the cases, the border must be traversed to reach giving bodies. In Canada, the numbers are stark. According to Canadian Blood Services, eighty percent of Canadians receive stem cell transplants from donors in other countries. And in March 2015, stem cell registries of the world, brought together by the non-profit Bone Marrow Donors Worldwide (BMDW), reached a milestone of twenty-five million registered global donors, their stem cells potentially within reach.

Transplantation, Trickery, and Faith

The global registry could be mined as a life-affirming embodiment of selfless giving as well as human interdependence. In a world where the bodies of refugees get entangled in red tape, nationalistic protectionism, xenophobia, barbed wire, seaweed, the bodies giving and receiving stem cells graph one onto the other. The transplantation of blood across otherwise stringent borders conjures up a vision of a different world, one governed not only by need and its satisfaction, but also by a visceral interconnectedness of cells and physical matter. The bodies know that they are the same. The bodies know that they need each other. The bodies know they flow into each other, undifferentiated, unchecked.

For the majority of blood cancers and diseases reaching for bone marrow transplants, the donated cells generating the marrow, and thus regenerating the immune system, must match as closely as possible those of the recipient. The match is in Human Leukocyte Antigens (HLA), the proteins that cover the surface of white blood cells and whose makeup is unique to each person. The closer the match of the HLA, the better chances for success. More potential donors nationally and globally increase the possibility of encountering a close match for any one patient. And therein lies the significance of coordinated registries worldwide, and the anticipation and the celebration accompanying the incrementally rising threshold of donors on the global registry. If you are unlucky enough to be in need of a transplant, you want to maximize your chances of finding a match. You want the world to be your registry.

The act of transplantation is one of faith: it is an attempt to “trick” the body into recognizing that new cells are the body’s own and hoping that the trick will hold. The new cells will eventually create a new immune system in the patient—if they don’t attack the receiving host body, if the receiving host body does not reject the new cells. We make the transplant and hold our breath. When they succeed, stem cell transplants may be part of the cure for patients who go on to lead relatively healthy long lives. Or they may at least—the appropriate qualification remains out of reach—prolong the time a patient stays alive, time with families and loved ones. The transplant is essentially a chance: a chance to cure, a chance to change the trajectory of the disease, a chance to reorient the energies and hopes and struggles of a patient and her or his family.

The Logic of the Genetic Lottery

In this world of trickery, faith, and chance, where humans are reduced to their bodies and their bodies are reduced to their HLA type, vulnerability and interdependence organize our experiences. Our battle against blood cancers, and our common and coordinated resources to reverse the degeneration of the body’s immune system, is global, profound, existential. And it is also shockingly, obscenely differentiating. Our vulnerability and interdependence, seemingly premised on a physical commonality, a sameness of our material humanity, are not distributed equally. We do not all join this battle and its random chances of winning and losing in equal measure. For the world of stem cell donations is not only ruled by luck but also by hierarchy and privilege.

Luck always paradoxically carries the potential to equalize in its very randomness—by virtue of being lucky, one becomes at once distinguished and ordinary. Anyone could be lucky. Luck presumes no logic and thus no structure, no categorization beyond the lucky and the unlucky. Luck is by definition difficult to pin down, to predict, to rationalize. But in the world of stem cell donation, luck may be measured down to a percentage.

National and global registries do not only amass the genetic material and good will of healthy young donors. They also register and organize this material according to ethnicity. Global genetic material and good will are categorized, differentiated, slotted into ethnicities: Caucasian, Native American, Arab West-Asian, East Asian, Black, and so forth. At the very moment that we are stripped down to nothing but our material, cellular being, to the very proteins covering our blood cells, we are once more reconfigured as groups, marked by difference, and perhaps also reconstructed by history. The moment is pregnant with potentialities, limitations, and implications.

HLA variations are part of our evolutionary history. Genetic diversity is governed by natural selection and environmental change over centuries. HLA, linked closely to our ability to fight off different pathogens, mutates to increase our chances of survival in different places and at different times. As humans first migrated from Africa to create communities all over the world, our HLA evolved in multiple ways. And because this change takes place over hundreds of generations, we each carry mutations that could be traced back through those hundreds of generations. Our present materiality is decipherable through a time, a place, a language, a community far removed from our current reality. We are marked by our evolutionary history. Our best chances of finding a stem cell match brings us back squarely to our particular gene pool, grounds us firmly in our ethnicities. The body in need of another body is recast as an ethnic being in need of their ethnic community. Our human interdependence is reformulated as exclusionary ethnic allegiance.

Cancer and Being Arab

Pouring over the components of the global registry, I am captured as “Arab West-Asian.” The bodies that may intimately know mine in the world of stem cells are those of other Arab West-Asians, or Arabs. The coordinates that measure the distance between my body and the bodies of other Arabs become suddenly pronounced. I imagine those coordinates as a web of exclusionary by-pass highways crisscrossing other ethnicities. I am grounded by my body, my place in the world is pin-pointed, my community defined. The gravitational pull of ethnic identity is overwhelming.

Classifications are never neutral, and hierarchies inevitably follow. In numbers, Caucasians are the privileged among those blighted by a life-threatening blood cancer, the luckiest of the unlucky. Caucasians make up seventy-one percent of donors in the national registry in Canada, a similarly disproportionate majority in the national registry in the United States as well as the worldwide registry. In other words, the world is your registry if you are white. And as in almost all other aspects of our socially, economically, culturally, politically constructed lives, privilege is about access and choice. A New York Times article from 2012 puts it bluntly: “less than 20 percent of black Americans now find the perfect donor match that could save their lives, while more than 70 percent of whites do.” Difference rears its ugly head in black and white. No subtlety, no equivocation. In Canada, Arabs make up less than one percent of the donors on the national registry. They barely show on the global registry. The disparities are striking. One article informs me, perhaps accusingly, that the “Chinese” in Canada, through hard work and dedication, have been able to bring up their percentage to eleven percent of the national registry.

The global hierarchy is merciless. And like all hierarchies, it has the power to define, to limit, to trap. Like all hierarchies, it is able to reassess our standing in the world and redefine our relations to each other. Difference is not about variety. Difference is about value—the life that will be saved and the life left to perish.

Inequality in the global hierarchy is due to a multiplicity of factors. Scientific innovation in the last few centuries is concentrated in countries of the North, former and current empires, where whites form the majority. In these wealthier, largely peaceful societies, organ donation has also advanced as a civic practice. The result is more registries in Europe and North American countries, and more white donors on those registries. By comparison, there are only two registries in all of Africa: one in South Africa and one, recently formed due to the efforts of a Nigerian-American Olympian, in Nigeria. Two registries for 1.2 billion people, an entire continent, the home of our global genetic ancestors. In the Arab world, two extremely small registries exist, one in the United Arab Emirates and one in Saudi Arabia—the latter, however, is not affiliated with the Bone Marrow World Wide association of registries. A further search locates Arab bodies on a donor registry in Israel. The numbers, world wide, appear to mimic a brutal and bare geopolitics, where the messy history of our postcolonial, neoliberal reality of North and South, East and West is mapped out in the visibility of white bodies and the concomitant invisibility of the rest.

Reaching for practical strategies to address the inequality, the literature calls for raising awareness globally to create registries in countries excluded from the international consortium, as well as encouraging minorities to register as donors at the national level. We need more Arab bodies on the registry, more Black bodies, more South Asian bodies and so forth to even out the field, to balance the books, to ensure that anyone of the unlucky would have an equal chance to find luck and a stem cell match. If ethnicity is to be reckoned with, we can at least make sure that the terms are equitable. Equitable redistribution of risk and chance, of luck and its derivatives. Redistributive justice as a framework to address historical and political and structural inequality.

Cancer and the Bodies of Arab Men Aged Seventeen to Thirty-five

This attempt to right historical and structural wrongs and create more representative registries nationally and globally is earnest, ambitious, and admirable. It would literally save lives. We aim to shore up our defenses against the ravages of cancer. The world of genetics, however, proves reliably disdainful of the goals of equality, equity, and justice. There is a reason, after all, why eugenics—“the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics”—is a marker of the worst and most exclusionary political ideologies human beings have produced. In the world of stem cell matching, genetic “purity” elevates and enables while genetic “diversity” or “complexity” encumbers bodies and stymies hope. In effect, those descended from a limited genetic pool have a much greater chance of finding a match. The products of a mixed racial and ethnic union, those children we look to as our future human shield against the forces of racism and xenophobia and segregation, have the least chance, are the most vulnerable, the unluckiest of the unlucky. A more diverse genetic mix means a more unique HLA makeup, where unique equals rare, and rare could translate into a death sentence. Children of mixed heritage are in fact worse off than racial and ethnic minorities. They are at the bottom rung.

What about that privilege that Caucasians enjoy as a matter of historical and economic geopolitical ascendance? It is also embedded in their genetic makeup, coded in their HLA. Those ancestors who migrated form Africa to Europe thousands of years ago to form the community we now identify as Caucasian “descend from the shallower end of the gene pool”; the group that migrated to Europe carried it with a limited sample of the genetic variety that existed in East Africa. Our African ancestors, by comparison, house a staggering genetic diversity in their bodies and the bodies of their descendants, augmented also by historical factors that brought different groups into contact and community. Today, people whose parents or grandparents or great grandparents descend from Africa or places with a rich mixture of ethnicities and civilizations tend to be more genetically diverse than people with a European ancestry. “In general, east African populations have the highest levels of genetic variation at their HLA genes, and populations further from Africa have lower levels. So, for example, people from the Middle East (which is a short jaunt from East Africa) tend to have higher levels of HLA diversity than Pacific Islanders.”

There is one further twist. While stem cell donation is prescribed for healthy young bodies that produce the most bone marrow—in Canada those between the ages of seventeen and thirty-five—male bodies are more desirable. While women are definitely encouraged to become donors and valued as such, pregnancy complicates a woman’s genetic makeup as her body incorporates the genetic component of the father and adapts and responds to that new component with antibodies and effector cells. According to Canadian Blood Services, “This higher sensitivity in a previously pregnant donor increases the likelihood of host vs. graph disease, a potentially serious complication where the donor immune cells attack the cells, tissues and organs of the recipient.” In crude terms, the stem cells of young male donors of your own ethnic group are the most valuable, the most coveted. Stem cell donation websites and drives often target young male donors.

According to the complex cartography of genetic evolution, my family and I are “people from the Middle East”; humans whose geographic and historical closeness to East Africa results in a genetic diversity that accentuates their vulnerability and disadvantage. Their HLA patterns do not find registries to house them in the Arab world and are hugely underrepresented on the national registries of the western world, and therefore exponentially disabled globally. To the list of individuals, institutions, and dynamics that insist on the visibility of my ethnic background, and on the risk-laden value of that ethnicity, I can now add cancer. It is a moment where the combined forces of evolution, history, and politics overwhelmingly and disdainfully impact one’s worldly orientation.

I am moved to consider with heightened awareness Arab bodies, and specifically the bodies of Arab men aged seventeen to thirty-five, the bodies where my genes may find and provide refuge. Those are also the bodies that may pragmatically, and without exaggeration, be considered some of the most risky, the most threatening, in the world today. The bodies least likely to be allowed through checkpoints and border crossings. The bodies that our present geopolitical moment invests with such unexploded potential—potential to disturb the peace, to alarm the populace, to do harm, regardless of the personal history or creed or political orientation of the young men who inhabit those bodies. These are the bodies that disproportionately populate the overactive imaginations of white supremacists or extra-judicial spaces like Guantánamo. The bodies that are both risky and at risk. The bodies that may be occupying university campuses in western cities, chat rooms and interstices of social media, torture chambers in the jails of authoritarian regimes, rickety boats crossing dangerous waters, and now occupying my shadow as I contend with my own genetic vulnerability. The bodies that may be staggering under the weight of their own social, economic, cultural, and political vulnerability. They are the bodies my body needs to commune with in the world of stem cell registries. The bodies I need to court as potential donors to registries that have yet to be established and ones at the forefront of a global battle against blood cancers.

It is heavy, the weight of those linkages and those ruptures between our materiality and our reality, the ways in which our bodies have the power to submerge, to lift, to succumb, to enable, to connect, to isolate, to let live and to let die. To think through the ways in which our interdependence and our vulnerability and our generosity as bodies and individuals and communities shift and settle. To imagine the ways in which our attempts to create a just and equitable world evolve and adapt, are strained and strengthened. And the moment is once more pregnant with potentialities, limitations, and implications.

[1] This piece is the result of research into bone marrow donation, following intensive volunteer work with families of children with cancer, from multiple ethnicities, at the Hospital for Sick Children in Toronto, Canada.

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