“Keeping it Real” While Staying Out of the “Loony Bin”: Social Ethics for Healthcare Systems (Listening to Women of Color with Breast Cancer: Insights for U.S. Healthcare)

This is the second article in a two-part series by Aana Vigen on “Listening to Women of Color with Breast Cancer: Theological and Ethical Insights for U.S. Healthcare.” Click here for part 1 of this series.

[1] These women who have survived or are living with breast cancer shared a great deal of embodied wisdom with me. They know a lot because they have been through a lot. They see and appreciate what is good in some healthcare contexts and what is problematic in others, and they offered up descriptions of what most matters to them as particular persons. What I have learned from them has significant implications for healthcare quality discussions. My questions now are: “What has to be in place in healthcare institutions for these themes to be more adequately addressed within the cultures and practices of healthcare than they are now? How might healthcare organizations and providers heed the wisdom of these women?”

[2] As a way to explore these questions, I will use the four themes as guideposts (the interplay of racial and socio-economic assumptions, the imbalance of power dynamics in the patient-provider relationship, the role and necessity of advocates and self-advocacy, the impact of bureaucratic processes and financial bottom lines) in order to reflect upon what they mean for the doing of healthcare. In making connections between these themes and ethical implications, I will touch upon four constructive possibilities for healthcare and medical ethics.

Racial and Socio-Economic Assumptions and Power Imbalances
[3] The combination of these assumptions with the imbalance of power dynamics inherent in patient-provider relationships is potent and potentially deeply alienating. Undeniably, all breast cancer patients are in a position of relative vulnerability to their oncologists given that the patients are physically compromised by cancer and depend on their doctor for care and help. However, it is clear that communities of color, along with those who are poor and/or who lack health insurance (or who have inadequate medical coverage), experience additional forms of vulnerability. Indeed, they are doubly or triply at risk because they may not be able to access care as easily and they may carry the burden of providers’ assumptions related to race and/or socio-economics.1

[4] Race and class are distinct but interwoven realities within U.S. mindsets and social structures. While they cannot be conflated, their intersections need to be understood. The combination of racial-ethnic and class assumptions can make a huge difference both in terms of the degree of access and visibility that darker skinned women have when negotiating healthcare as compared with lighter skinned women. Having excellent insurance coverage does not magically dispel these assumptions from the minds of care providers.

[5] Sophia’s sense that providers expect her to change their minds reveals a lot. There is something seriously-systemically-wrong when patients such as Sophia feel the burden to change provider assumptions-to demonstrate that they are “different,” “one of the good Black Puerto Ricans” so that providers will be deeply invested in doing the absolute best they can for them. It is an unjust burden for her and others to bear. Given the relative power differences, the burden ought to fall on the providers-to work harder to know, understand and care for the patients who are most different from them. For it is in these scenarios where misunderstandings, mistrust and poor communication are most likely to fester and cripple patient-provider relationships, treatment plans and cure rates. In considering the weight and prevalence of these assumptions within a context of unequal power dynamics, two specific suggestions for change surface.

Conclusion #1: Educating Providers to See Their Own Assumptions
[6] Providers need to be attuned to the peril of compartmentalizing people. Seeing patients primarily though the lens of their physiological condition, insurance status or through assumptions based on racial-ethnic and/or class background diminishes and limits the quality of their care. Such narrow vision can render the actual persons invisible.

[7] Healthcare systems and practitioners need to understand that it is unjust to hoist the burden of changing provider assumptions onto patients. Instead, healthcare institutions and practices can and ought to support the seeing and understanding of the social contexts in which these lives are situated. Simply put, we-as providers, ethicists, healthcare practitioners and professionals, and theologians-need to do our homework. For holistic care to be comprehensive, appreciation of the person as embedded within a network of socio-economic, cultural, familial and political relationships and structures is needed in addition to attending to her physical, spiritual and intellectual dimensions.

[8] Antonia spoke to these qualities when she described the kind of doctor she hopes to become:

The kind of doctor that I want to be is a doctor who . . . truly, truly wants what’s best for the patient, and is not just looking at the patient as an illness, but is learning about who that patient is, learning about their background, about the family home life, what’s going on with them . . . You’re constantly learning about diseases and illness [in medical school]. And a lot of times, you’re not exposed to patients. And, but when you are, and you get that little piece of information about them which fascinates you-something you find out about them, and you’re like, “Wow, this is a person who has a life, this is a person who has dreams.” And you just learn so much more about them.
Rather than using such contextual information to stereotype a person, the provider can use it to be attentive to the complexity and richness of every human life. When doctors possess these skills, they stand out. Antonia observes: “But I personally have seen many, no, I’ve seen a few white doctors who are amazing to all their patients . . . [T]hese physicians who are amazing were culturally competent. They were respectful. They were understanding. And it’s interesting how that can cross over all cultures (emphasis hers).” I take heart in knowing that at least a few of Antonia’s white mentors get it.

[9] Antonia mentions an important and increasingly discussed concept: cultural competence.2 There are many possible strategies for enculturating such understanding. I would like to highlight the need for intensive cultural competency training. By cultural competence education, I mean integrated attention to racial-ethnic, socio-economic, linguistic, cultural and religious particularities that shape patient needs, perceptions, experiences of health and illness, needs and fears with which they contend. Such education must teach both appreciation of the complexity of others’ lives as well as critical self-reflection. Said differently, ethicists and providers need to analyze in-depth the socio-economic contexts of healthcare provision, and we need to articulate and attend to our own internal assumptions and biases.

[10] The word integrated is important. One course or class segment devoted to “cultural diversity” will not suffice. Instead, a cultivation of these skills ought to be integrated throughout courses as well as be reflected in how clinical training is taught and modeled. Moreover, some curricula are better than others in this regard. Some amount to little more than cataloging a list of generalized (and sometimes stereotypical) descriptions of certain cultural or linguistic habits, preferences, practices, etc. Others require prolonged critical self reflection, analysis of power dynamics and privilege, and the unmasking of stereotypes and assumptions. Thus, the quality and ethos of the training and curriculum matters a great deal.3

[11] Antonia worked for a not-for-profit organization before going to medical school and still volunteers with women of color cancer support programs. In light of these experiences, she suggested that immersion in a racial, socio-economic and cultural context that is different from the student’s be a part of one’s professional development:

I think that everybody, before they go to medical school, should really spend a year someplace where they wouldn’t see themselves. Just someplace where they really have no clue about those people, or that group of people . . . Yeah, just to sort of, you know, go away, go somewhere, go to the Caribbean maybe, or go to Puerto Rico, or the Dominican Republic, go to Cuba, come up to Harlem. They’ll go to East Harlem, spend time in a small HIV clinic. That’s what I did. I was a-I went to an HIV clinic for about six months, and I volunteered there. It’s putting yourself in the position to learn from others . . . And just seeing something from a different view, and being around people [who have a different view].
Antonia is right that such experiences are a wonderful way to prepare for medical school. However, given that all students may not seek out these experiences on their own before gaining entrance into a formal medical program, the schools need to provide them as well. Immersion experiences, mentoring programs and clinical experience in socio-economic and racial-ethnic contexts that differ significantly from the student’s are all ways in which assumptions and beliefs might be questioned in ways which enrich understanding and care. Sophisticated methods for critical self-reflection must be a part of such curricular programs. Additionally, greater emphasis on speaking and understanding second languages is needed both at undergraduate and graduate curricular levels than is currently oftentimes present.

[12] However, such suggestions may be hard to realize. The cultures of many medical programs are predominately focused on the important matters of learning the physiological and technical dimensions of healthcare. Antonia herself does not expect her formal education to teach her the skills of relating to patients:

I wouldn’t say there’s an actual push for us to really bond with patients-you know, to really learn about the patient. But there are bits and pieces, sort of to remind us, you know, that you-you’re going into this medical profession . . . You need to know how to communicate with your patients, and that’s very important. But I think it’s something within you. It’s . . . very difficult to learn. It’s not going to be part of your medical education. You’ve got to either develop it through experience or have it.
Antonia is right that such things are challenging to teach and instill in another. Yet it gives me pause that she does not expect such values to be part of her formal education. I wonder how many medical students have similar experiences and expectations of their curricula. I believe that some medical and nursing programs do foreground an ethos of service to and understanding of our diverse society; however, I am not at all certain of how widespread this pattern is.

[13] There are opportunities to gain such skills after graduation. Many hospitals periodically offer diversity trainings to their staff. However, brief diversity trainings held for current healthcare professionals can fall short of what is needed. Staff sometimes view them as nothing more than a bureaucratic hoop for accreditation. Indeed, a couple of the care providers were clear that short diversity trainings do little to alter provider assumptions. Beef Stew, a nurse case manager, was pointedly candid in her criticism of them:

That’s a bunch of bullshit. Okay. Because how it is conveyed is not from a person of color. It’s from a person who says, “Okay, these people are complaining about there’s a problem. Okay, how do we be nice to them? Okay, this is how we’re going to be nice to them.” . . . That’s putting a Band Aid on it. That’s not, like, “Okay, well, let’s try to understand the problem, okay? This is a problem. Why is this problem happening? . . . All right, now, how are we going to change this to improve the dialogue between us, to improve the communication so this doesn’t happen again?” That’s not the spirit that it’s coming from. It’s coming from, “Look, okay, the Department of Labor says we have to do this.”
The impetus behind the training matters. It also matters if the hospital and practitioners are open to rigorous self-critique, or if they want to apply “Band Aids” that give an appearance of serious attention to the issues. Indeed, interpersonal communication techniques cannot be employed as “tricks” to build trust with a patient. Attempts at understanding and compassion need to be sincere. If not, none of the strategies will help much because they are motivated by self-interest rather than concern for others.

[14] Moreover, the narrow scope of these trainings and cultural sensitivity courses can limit the scope of the analysis as well. Some researchers contend that the culture of medicine and the medical gaze may make it difficult for communities of color and/or lower socio-economic classes to be seen as persons. For example, Good and Good add that such classes often focus on the culture of patients without incorporating social analysis:

Until recently, when cultural analyses were proposed, the focus was largely on patient culture. Burdens of difference were on patient communities, and medicine and health professionals were expected to learn to be culturally competent in attending to the diverse populations that make up American society. When we are challenged to examine the culture of medicine and of our healthcare institutions, we are also challenged to bring a critical perspective that has largely been ignored by most research to date or that has circumscribed cultural inquiry to the differences between patients’ and physicians’ “beliefs.” Disparities in medical treatment are not simply matters of differences in “beliefs.” Clearly, political and economic factors that shape our medical commons and our larger society are implicated in the production of these disparities.4
Culturally competent care involves more than learning about different foods, beliefs and religious practices of patients. It must also rigorously and self-critically analyze the socio-economic and political forces that structure healthcare institutions and practices themselves.

[15] I asked Wanda who has been both a patient in and an employee of hospitals how hospitals can engender respect for persons:

I think you have those culture sensitivity courses. And you stay on that. You-not just have the courses, and then, okay, they’ve got the training, but see how the staff is treating the patients. Walk around, you know, be involved in something. Because what I think tends to happen is that people will go-some hospitals offer the culture sensitivity course. And then the staff will go. But then what happens after that? How do you follow up and how do you make sure that they’re doing what they’re supposed to do? Because, like I said, I worked in a hospital, and I’ve see what happens. And even if you take culture sensitivity classes, people don’t follow, follow those things. So I think having the higher-up staff oversee it, making sure that it’s being done, instilling that in their staff . . .
Wanda understands that periodic trainings will not change the culture of institution. Real change must be consistently promoted and instilled at all levels within the organization. In particular, Wanda notes the importance of those in leadership positions. Akin to mentoring medical and nursing students, administrative managers, senior physicians and nurse managers need to see the value and need for such efforts and change.5

[16] While a simplistic “top down” approach can alienate staff, so too will efforts flounder at the staff levels if change is not supported by the leadership of a hospital. Both levels need to be engaged for cultural competence to take hold within the practices and sensibilities of care settings. Instilling such awareness and sensitivity is a complex process of moral and professional formation to which both honest self-criticism and social analysis are integral.

Conclusion #2: Emphasizing Healthcare Leadership of Color
[17] Apart from the ability to cross cultures to build trust and understanding, there is also the matter of increasing the number of providers of color. More leadership of darker skinned people within healthcare will transform the cultures of institutions in ways that no number of diversity trainings can. Some quantitative studies have found that race concordance between patients and doctors aids patient satisfaction. Undeniably, many patients and doctors succeed in creating strong bonds regardless of race concordance or its absence. However, having more staff of various racial-ethnic backgrounds will affect medical cultures and assumptions in ways that are both broader and deeper than a singular focus on cross-cultural patient-provider relations. For example, care providers of color might propose changes for how various religious traditions are accommodated, for how language translation services are provided and for how a hospital connects with its surrounding neighborhoods and communities through education and prevention programs.

[18] Such diversity among healthcare providers is especially needed at leadership levels-senior physicians and medical school faculty. Beef Stew observes that there are numerous staff of color at her hospital, even doctors, but not in leadership roles: “(T)here’s plenty of doctors of color. I’m talking managers. I’m talking head honchos. I’m talking calling the shots. I’m talking, you know, nurse managers, vice presidents, CEOs, board of trustees. That is what’ll make an impact.” For substantive changes to take hold, is not sufficient to have a diverse staff at the level of technicians, nurses, nurse assistants and clerical support.6

[19] Presently, the racial-ethnic diversity represented within the general population is not reflected in the population of healthcare providers. Latinos represent fourteen percent of the total population and that Blacks represent thirteen percent of the total population. Yet Latinos “make up 2% of registered nurses, 3.4% of psychologists, and 3.5% of physicians . . . and while one in 8 Americans is black, fewer than 1 in 20 physicians or dentists is black.”7 The Association of American Medical Colleges reports that as of 2000, nine percent of all medical school graduates are members of one of these four communities: African American, Asian American, Latino, and Native American. One current estimate is that within this total percentage, Latino graduates comprise 2.25 percent of the total population of medical graduates.8 Latinos now constitute the largest and fastest-growing ethnic community (comprised of many differing racial-ethnic and cultural communities) in the United States. Yet their numerical growth within the ranks of healthcare professionals continues to sputter.

[20] Unfortunately, change in this reality does not look promising. The New York Times recently reported that the current administration’s budget does not see leadership of color as a priority: “President Bush’s budget would cut spending for the training of health professionals and eliminate a $34 million program that recruits blacks and Hispanics for careers as doctors, nurses and pharmacists.”9 It is disturbing that such cuts are being proposed even as the administration has been criticized for trying to downplay the realities of racial-ethnic disparities in healthcare.10

[21] Having drawn this conclusion, it is also important to not see the problem only as one of numbers. Good and Good make the case that the medical gaze is potent in training students to focus in upon certain information relevant when listening to and giving care to patients. In short, students of whatever color are taught to “speak the language of medicine.” They argue that this culture is strong and pervasive even though there has been “a sea change in the gender, and to a lesser extent, the racial and ethnic profile of medical students. In addition, extraordinary developments in medical technology, biomedical science, and the political economy and financing of medicine and the delivery of healthcare appear to be subsumed into this culture and way of learning medicine.”11 Having more providers of color is essential, but it is not a simple solution to the complex nest of problematic disparities. The very way in which medicine and healthcare are taught needs substantial revision as well. Furthermore, ongoing race and socio-economic class analysis is needed on the part of healthcare providers, students and educators.

The Imperative of Advocacy and the Impact of Bureaucracies and Bottom Lines
[22] After surveying the extensive and growing medical sociological literature on healthcare quality disparities and interviewing a few patients and care providers, I have come to the conclusion that radical changes are needed in the structures of U.S. healthcare provision. Piecemeal approaches cannot sufficiently address systemic problems. A system where doctors are reimbursed different amounts for different patients-or even worse where they are compensated to attend to some but not others-already sets up structural care disparities in which some lives are more valued than others. Indeed, the political economy embedded within the financing, organization, and delivery of healthcare dehumanizes some by making available to others (those with the financial, political, and social resources) healthcare that is more comprehensive and better matched to their health needs and cultural backgrounds. Simply put, initiatives aimed at making individual providers more sensitive will falter miserably if they do not address the economic systems and institutional cultures in which the providers are supposed to learn and practice this sensitivity.

[23] To make this case does not mean that no poor person or person of color receives good care. In fact, many, many do-the women with whom I spoke testify to this fact. Rather, the point is that regardless of the fact of whether or not some individuals encounter exceptional care, skill and compassion, an intrinsically unjust system is in place which contradicts the egalitarian principles and ideals to which it aspires. As Leonard Orlando, a white oncologist, put it to me in our conversation, “I’m very idealistic, and it’s very important for me to be a human, humanistic. But I don’t think the environment supports that . . . (T)he system promotes-encourages us to be otherwise.” Cavernous disparities in care due to combinations of access and quality issues mock and transgress the moral obligations of a democratic society. Therefore, the fact that some lives are more fully seen, valued and respected than others represents a serious moral problem with which ethicists, healthcare policymakers and theologians all must wrestle. In response to the failings of present structures, I offer two specific recommendations.

Conclusion #3: Funding and Support of Community Networks
[24] Several of the women told me stories of how they were only able to access acceptable care because of a friend or a contact in a healthcare network that helped them make a change: María’s daughter sought out care at another hospital; Luz would not have been able to get into a site of care she preferred without the help of a friend and the friend’s sister-in-law (a nurse). As a nurse case manager, Beef Stew acknowledged that while she does her job for every patient, she takes additional time to educate patients who do not have many resources at their disposal.12

[25] In short, without advocating for themselves along with the advocacy of others, many would have remained in care settings with which they were neither satisfied nor comfortable. Quite literally, advocacy and connections help you be seen. Consequently, I find that community not-for-profit support and information networks provide vital services to women. They help them process everything they are going through and make informed decisions.

[26] I shudder when I contemplate the traps in which those who are ill and who do not have these networks or connections-those who are timid or isolated-may find themselves.13 One of the breast cancer support group facilitators coordinates a Latina group to which predominately new immigrants come. Many of the participants speak only Spanish and some are undocumented. Many have no benefits or health insurance and find it difficult to attend the support groups after they are well enough to work. They cannot afford to stay at home during their recovery because of their need of the income, however meager.

[27] This facilitator explained to me that many of these immigrants are scared-because of the cancer, because of their immigration status, and because of their very limited income levels. She observed that many of them come from cultures in which it is expected that patients trust their doctors and do not ask questions. These insights gave me a sense of why I may not have heard more immigrants complain about the quality of their care when I spoke to them at the support meetings. Indeed, the facilitator said that many of the Latina immigrants she has worked with are so afraid of dying or being deported that they are simply grateful for whatever care they do receive-even if there are no translators or doctors are rude, inattentive or hurried. Without groups such as The Witness Project of Harlem, Share, Cancer Care and Gilda’s Club, many women would not have a safe place to ask questions, learn about their disease and treatment options and receive emotional support.

[28] Moreover, these organizations intensively work to create deep connections in the communities they serve. Rather than using a white staff person coming to facilitate a group in Harlem or Queens, for example, all of the above organizations make it a priority to have group facilitators who share the cultural and racial backgrounds of the communities in whichthe groups take place. More ample funding and support of such community networks is essential.14

[29] Unfortunately, these non-profit organizations, which rely heavily upon volunteers and donations, are not prioritized in healthcare funding budgets. Community health programs-community-oriented prevention and educational services-tend not to be emphasized by either government or private healthcare institutions. Many of the organizational representatives spoke to me how strained their budgets are and how precarious their futures can be from one year to the next.

Conclusion #4: The Value of Continuity and Choice
[30] All patients benefit from the opportunity to work with the same provider over time so that trust and rapport can develop. On the other hand, they also benefit from being able to switch providers if they are uncomfortable with their care in a given setting. Given the social, economic and structural power imbalances, patients of color and/or lower socio-economic status need to be able to keep or change a given provider without fear of losing healthcare coverage. Hannah’s story describes the experience of one woman who, because of the comprehensive and generous nature of her health plan, has felt free to interview prospective doctors as needed before settling on one. And once she has made her choice, she has not had to worry about a change in doctors being made without her involvement.15 What amazes me is that Sandra, temporarily without insurance, forged ahead and switched doctors until finding one to whom she could relate to as a person. And it is important to note that she was able to do this both because she is a strong woman who is also a well-educated nurse and because she had nurse friends and contacts helping her to navigate her way through this harrowing time.

[31] While having excellent health insurance is not a guarantee of receiving excellent care, what it can do (both literally and metaphorically) is buy more time. Not having to worry about what services and tests will be reimbursed or how many visits will be covered can create a context in which there are sufficient opportunities for women of color to break down provider assumptions and to build up relationships. Sophia’s story represents one example of this transformation. She was clear that when her breast cancer was first diagnosed, she was able to get through to her doctors because she and they knew that they would be working together over time. There was continuity of care. She developed a strong relationship not only with her breast surgeon, but with her oncologist and the nurses and nurse practitioners as well. As a team of providers and as individuals, they crossed their cultural, racial, and socio-economic differences to come to know Sophia as a unique and valuable person.

[32] The point is that such transformations take time. When I asked Sophia how it is possible for providers of differing backgrounds from a patient to create genuine relationships and to see the patient as a person instead of as a stereotype, she remarked that: “Unfortunately, it’s not something that you can go in and change off the bat, like with people of the same race. Like if a white person goes in to see the doctor, there are no defenses. You know. Unfortunately, with me personally, it’s something that comes in time.” I then added, “So it’s kind of like you have to work harder.” Sophia responded: “Yeah. It’s something that you-that, in time, kind of works itself hopefully and just disappears. And there’s always the little underlining of, “When are they going to show their true colors?” . . . Yeah, like, you know, I don’t think now they think that there are any true colors. You know? I think they see this is her true color. But I, you know, that took – that takes a little longer.”

[33] Ultimately, this need for continuity and choice means that universal healthcare needs to get back on the table as a serious topic for healthcare policy reform. Since the 2000 election, the bulk of congressional healthcare debate has taken the form of prescription drug coverage for seniors and what to do with respect to the internet availability (and substantially lower prices) of Canadian prescription drugs. Prescription drug coverage is a topic worthy of public debate. By itself, however, it makes for anemic healthcare reform. Current political platforms are a far cry from the healthcare reform agenda on which Clinton and Gore ran in 1992. Twelve years later, a comprehensive approach to healthcare reform is sorely absent from the public scene.

[34] A form of universal healthcare may help to make healthcare less of a private commodity purchased by some and more of a public service provided to all. Without universal coverage, providers are compensated differently for different patients. Leonard, the white oncologist, laments that he cannot take Medicaid patients because the rates do not adequately compensate his services. Even as he defended the free market economy, he cautiously noted: “[C]ancer care is so complicated and comprehensive that it’s hard to do a lot of pro bono work. But it wouldn’t matter, a patient’s economic status, if [doctors] had full-time positions. You know? With just a set salary.”16

[35] Leonard also noted that there ought to be fewer administrative hassles in order to give more time and better care. He complained that his days are too occupied by the piles of paperwork-not done only as medical charting-but as formulaic, duplicative documentation for insurance companies. Rebecca Williams, a white oncology social worker, also commented that her main frustration is that she has to spend an inordinate amount of time on paperwork, instead of offering psycho-social support to patients. Discharge planning has a tangible benefit to the hospital’s finances; sitting with and listening to patients do not. Again, Leonard expressed a similar sentiment: “(M)y salary is very much tied to my productivity . . . And the reality is . . .that insurance companies [don’t] pay for an emotional investment, really . . . You know, not that one wants to, you know, bill, you know, for compassion . . .But the point is that there are constraints that are very much in place that force one to kind of keep moving forward and moving ahead.”

[36] Of all these collaborators who shared enlightening insights and experiences, Sophia spoke with the most candor and critical reflection. She had no trouble naming the fact that human beings arbitrarily create systems of meaning (such as those focused on wealth) and that in doing so, we have fashioned a world light years away from what God wants for us. In not shying away from stark honesty, her words took on a prophetic quality for me. Akin to all genuine prophets, she knows that being real and speaking truth can put one in danger-they can “end up in the loony bin.” I heard this prophetic voice most clearly at the end of our interview when Sophia described the ideological framework in which U.S. healthcare is conceived and given. Her incisive analysis needs no further introduction or commentary from me. Its wisdom speaks for itself. Indeed, without realizing its Greek meaning, Sophia chose her pseudonym well.

SA: It’s this world that we’ve created. And money is something that’s created. And, you know, gold is in the ground, I mean, that’s, like, free, really, when you think of it. You know, we’ve made this-we’ve given it so much importance. And when you think about the rest of the world, like the backwoods, and we think that they’re really primitive, but places in Africa and places in Nicaragua and places all the way back in the hills, they have medicine men who cure people. And they would never think of taking a dime for doing what is the most natural thing to do in this world, which is make you well if you are sick. People will give them food and give them donations. And . . . but they would never think of taking money for something that, in their eyes, is a God-given gift. And, you know, I think, you know, there are a lot of healthcare providers and healthcare facilities that try, you know, to do things. But in the math, in the math of it, you know, medicine is a corporate business. It’s not a business of sacrifice like that anymore. I’m not saying that everybody’s like that. And there’s healthcare professionals out there who do. But I think self-sacrifice is, like, such a big thing. And I think that God would like that.
AV: But the context of the institution or the system isn’t set up to facilitate that.
SA: No, no. And it all comes down to the almighty dollar that we ourselves have given all this importance to. Well, we still have to pay our bills and all that. I mean, there’s got to be-I guess for people who don’t have the same kind of faith, they have to have something to hold onto, and something that is important. So you can make up anything and make it important. I can make that picture important. I can make it the most important thing in this house, you know. But it really-that’s what it is. It’s not real.
AV: No.
SA: And I think that’s what God wants. I think that’s what God wants from all of us. You know?
AV: Yeah.
SA: It’s really, really out there, though.
AV: No. But it’s also just right here.
SA: Yeah. It’s right here, which is why nobody’s going to do anything about it.
AV: It’s too close.
SA: It’s too close. It’s too real. And people that tend to be too real are the ones that end up in the loony bin.

Why These Stories Matter: Methodological Implications for the Doing of Ethics
[37] Before drawing this work to a tentative close, I would like to discuss one last relevant area of analysis: implications this research has for the doing of social ethics itself. The conclusion I draw is simply this: It matters who is at the table. My research does not portend to solve the various problems related to healthcare disparities. Neither my desk nor brain is big enough to bear to such weight. In other words, no single person or group is able to arrive at such a resolution. Indeed, well apart from offering the above constructive points for changes in healthcare delivery, I seek to contribute to changing the way in which we as academics search out these answers. Not only does the content of decisions fundamentally matter, but the process used to come to them matters as well. It is my conviction that adequate and dynamic understandings of dignity, respect or personhood only happen through the course of sustained and broad relationships and conversations in particular communities-and out of profound dialogue across difference. Moral deliberation and formation are neither one-time nor individual events. Even more, they are not the sole property of scientists, policymakers or academics.

[38] This insight is as true for theology, the social sciences and healthcare policy as it is for social ethics. Across disciplines, a shift is needed in how we think about and tackle the pressing problems and questions facing us. With respect to healthcare quality disparities, those who have most directly confronted healthcare quality disparities ought to be at the tables and involved in setting the terms of the conversations convened to eradicate them. We need to find the answers together. Ethicists, physicians, social scientists, healthcare policy analysts and theologians all need the knowledge of those who may be laypersons with respect to our fields, but who know viscerally what it means to feel disrespected and disregarded in society.

[39] James Spradley begins The Ethnographic Interview with a basic but crucial distinction: “Rather than studying people, ethnography means learning from people.”17 In order to learn from people, you need to assume you do not already know what they are going to teach you. Spradley goes on to acknowledge: “Ethnography starts with a conscious attitude of almost complete ignorance.”18 The value of this insight is multifold and it is not limited to those in academia. First and foremost, I-whether I am a white scholar, activist, teacher, social worker, doctor, friend, or church member-will learn more if “what I think I know” does not get in the way of actual learning and listening. An even bigger payoff, especially in terms of the formation of a white scholar, is that when one is not overly focused on being an expert, but rather on being a person, there is great potential to cultivate humility both within one’s vocational endeavors and inner spirit.

[40] Moreover, there are ramifications here not only for individual scholars, but for entire disciplines. To put it bluntly: White scholars may profit greatly if/when we spend significant, sustained time and energy outside of libraries/offices and inside a variety of relationships and activities. I came upon inequalities in healthcare not primarily by deducing the problems from books of social theory, ethics and theology, but by listening-to patients, loved ones, and staff-and by working in relationship with them.

[41] In a related vein, it would be helpful if more academics would push ourselves to speak and hear fluently second and third languages-not only to read or translate them. Even if English is a common language between a researcher and the people with whom she is working, meanings cannot be taken for granted. Semantic differences, even when the same language is being spoken, ought not be overlooked.

[42] For example, especially when I, a white person, attempt qualitative research within communities of color, I do not want participants to translate meanings for me, to cease speaking their own language and begin to speak in ways that are more familiar to the white, and/or professional ear. If I want to hear people in their own voices, then they need to not alter what they are saying to overly-accommodate me. The burden is upon me, the white scholar, to understand (or to learn to understand) what others are saying-their experiences, culture, worldview-in the fullest sense possible.19 Of course, the persons with whom I am working will always be accommodating me to a degree and every description is a translation. But the important point is that I must make every attempt possible to ensure that my descriptions flow as directly as possible from the concepts and meaning of the people with whom I am working or interviewing.20

[43] For white academics to engage racism and white privilege adequately in our scholarship, we need to find avenues of contact and relationship with the people who most directly confront racial inequalities. Learning from scholars of color is vital and we need to ever expand our treatment of their texts. Yet we ought not stop here. The incorporation of works by scholars of color will be stronger and more credible if it bears out in relation to concrete movements, projects and experiences. It not only matters whom I have read, but with whom I worship, eat lunch, volunteer on weekends or evenings, lobby politicians and canvass the neighborhood. It takes time and effort to cultivate the sensibilities and skills within white academics that will curb the presumptuous and self-righteous qualities often present in white identity.

[44] While not all white scholars will do formal qualitative fieldwork in their research, more ought to consider it. Moreover, there are other avenues for similar involvement (volunteering with grass roots organizations that address housing, poverty, education, environmental racism, prison reform, healthcare or migrant labor issues). I am well aware of the pressure to increase one’s scholarly credentials, namely to publish books and articles. But perhaps an additional measure of an accomplished scholar ought to be given more weight: The hours one spends working with community programs dedicated to social, economic and racial transformation. Perhaps seminaries, colleges and universities might more intentionally promote and support the notion of a public scholar, whose task in whatever field is not only to advance knowledge, but to contribute concretely to the shaping of people and communities in which the scholar lives and works.

[45] In sum, there is a claim upon all scholars in whatever field (and of whatever racial-ethnic background) to envision and create even a small corner of the good society. Intrinsic to any such creation is a specific claim upon me, as a white person and scholar, to cultivate sustained, concrete relationships with communities of color in entirely different life situations and vocations from myself. These kinds of practical engagements and relationships are of paramount importance especially for white scholars and other scholars of privilege. For if we do not get it right in our day-to-day interactions and relationships, we won’t get it right in our scholarship either.

Catching a Glimpse of the Reign of God: What Solidarity Means
[46] The theological case made by this dissertation is this: For any theological description of what it means to be a child of God, or made in the image of God (imago dei) to be adequate, it needs to be concrete-incarnate-and reflective of the needs and experiences of the most vulnerable-in a city, in a region, in the world. From this theological starting point, I have argued in the language of ethics that for any positive change in healthcare quality to take place and last in institutional and interpersonal ways of being, we need attuned and sustained listening to those who occupy vulnerable positions in both society and healthcare settings. I am trying to envision and articulate what justice and solidarity mean and how they might be realized more fully, even if imperfectly.

[47] Sustained and self-critical attention to those marginalized by systems of injustice is the only basis upon which efforts at solidarity are possible. Those in relative privilege (white, middle- and upper-socio-economic classes, the well-insured, the presently healthy, the educated, members of the First World) need to not only “care” or “feel badly” about the plight of those less privileged, but must also understand that we are both implicated and accountable for their life situations. In responding to economic globalization, Cynthia Moe-Lobeda defines solidarity this way:

Solidarity entails seeing, hearing, and heeding what is obscured by privilege: people and other parts of creation destroyed, degraded, or impoverished by five centuries of globalization, culminating in the contemporary form. Said differently, people of economic privilege will seek out and hear the stories of those who experience globalization as a threat to life and will respond to those voices.21
Whether the topic is globalization or healthcare disparities, Moe-Lobeda’s emphasis upon seeing, hearing and responding to the stories and peoples most threatened by present structures is crucial. Calls to solidarity ring hollow if they are not accompanied by profound efforts to listen, perceive, understand and respond. Listening on the part of the relatively privileged ought to involve a cost to the hearers-and a fundamental change in their dispositions and practices.

[48] Moreover, solidarity necessarily involves recognition of others in their particularity and uniqueness. Differences are honored, not erased. No one is left unaccounted for or rendered voiceless. No one is superfluous. Everyone’s unique heart, perspective, and abilities are needed. This is how I envision the reign of the divine. In contrast to an autonomous and individualist notion of the self, Roman Catholic and Womanist theologian, M. Shawn Copeland, understands personhood only within the context of complex and diverse peoples living and working together. Indeed, such efforts at solidarity offer a glimpse of the dominion of God in which everyone in bright and varied array is present and participating. Copeland casts solidarity in an explicitly theological light by contending that attempts at solidarity are a way to worship God.22

[49] Copeland’s conceptualization of the relationship between personhood and solidarity calls those of us in positions of privilege to radical accountability: “If personhood is now understood to flow from formative living in community rather than individualism, from the embrace of difference and interdependence rather than their exclusion, then we can realize our personhood only in solidarity with the exploited, despised, poor ‘other.'”23 The significance of solidarity is found not only in the possibility of social transformation or in an embodied respect for exterior differences, but also in its potential for inner transformation as well. Not only is the care of vulnerable communities at stake, but so is the moral formation of those less vulnerable-the affluent, the lighter skinned, the healthy, the well-insured. If we do not push ourselves and our communities to live and act in ways that are in solidarity with those socio-economically, politically and physically at risk, we stand to lose our own humanity.24 By putting ourselves above such struggles or denying that we are inherently implicated, the formation of white and privileged beings continues to be woefully misshapen. The consequences are both devastating to others and shame-producing for us.

[50] Indeed, we can be downright ugly and mean-spirited. Two of the care providers I interviewed, Beef Stew and Lucy Bristol, spoke of a personality characteristic that they would like to see disappear, which seems prevalent among both their white patients and colleagues. Lucy explained how she has noticed that white and/or affluent patients can be less appreciative of and feel more entitled to healthcare. She observed that they are less likely to say “please” and “thank you” whereas less fortunate patients “are so grateful for any little thing you do for them.” She found that in the city hospital where she once worked, the patients (the vast majority of whom were impoverished and persons of color) were more respectful of the nurses than some of her white and affluent patients at the well-respected private hospital where is currently employed.

[51] More than Lucy, Beef Stew was sharp in her description of this trait:

It’s amazing how people believe that they have this white card, and they can do anything that they want . . . And I would really love . . . to find out how that has happened, so that we can knock that down. Because once someone gets taken down a peg, not to humiliate, but to understand that, look, you are not privileged because your skin is white, you’re a blonde, . . . . You’re a human-take that off . . . you bleed the same way I do.25
I have started to refer to this pernicious disposition noted by Lucy and Beef Stew as a “white entitlement syndrome.” Beef Stew makes a very important distinction: Calling white and other privileged people into accountability for our presumption is not done to humiliate us, but rather to stop allowing white persons and communities to be the center-the standard and the norm. “Taking us down a peg” is done so that we might be who we most truly are: human beings intrinsically inter-related and accountable to other varied, but equally beloved human beings.

[52] Ultimately, combating white entitlement, privilege, discrimination and bias involves not only education, but conversion. People of privilege, perhaps especially the ones who espouse and cling to “good intentions,” need vehicles for honest self-reflection. For example, I commented to Wanda that most likely healthcare providers do not want to/intend to look down on anyone. Yet when there are differences between providers and patients-race, socioeconomic class, HIV status, culture, religion, language-it is complicated to meet the other as a person. I then asked her how care providers might learn to more fully understand and respect people within such particularity. She responded:

I think it takes a lot of soul searching within the individual self, you know, because I know people, they know that they’re doing something wrong because I’m pretty sure they’re getting complaints, you know, the way they may have treated a patient or something like that. They get complaints on that so they know . . . But I think you have to be willing to accept that you did that, and be willing to make that change. But a lot of people are not willing to do that because they think, “Oh, it’s not me, I’m not like that.”26
Both hearts and minds of the privileged must turn in new directions in order to see and appreciate the humanity of others. This dissertation has tried to articulate methodological steps that may facilitate the soul-searching and intellectual analysis needed. A combination of different and sharp tools are needed to cut through the tough, encrusted layers of denial that keep peoples’ eyes, intellects and souls from seeing how our assumptions and sites of privilege wound the well-being of others.

The Possibility and Necessity of Making Normative Claims
[53] All human beings will always have to re-evaluate the world we are creating or want to create. We must always be on the lookout for who is not among us, who has not spoken and who has been left out or put aside. Revision does not equal relativism in ethics. However, it does mean that all our expressions of justice, faith, right relationship, grace and love are approximations-finite and imperfect and ever in need of critical re-evaluation.

[54] When we think we arrive at the last word or the final and complete sense of a value, virtue, principle or theological concept, we have fallen into idolatry. This statement does not mean there can be no norms. For me, to love one another as our self and to love God with everything we’ve got transcends time, space and context. Yet its meaning must always be worked out in the particular and in concrete relationships. What loving the neighbor means in one context may not look or translate exactly the same in another. Appreciation of this reality helps to keep the norms vibrant within embodied relationships and structures, rather than eroding into “pretty” but abstracted concepts that fail to manifest in lived reality.

[55] We cannot deny the impartiality of all knowledge or the particularity of social locations. Ironically, recognizing particularity may actually open the door to a kind of universality. In Carter Heyward’s words, “Knowing our particular social locations and our limits . . . . is intellectually empowering as a lens through which we may catch a glimpse of what is, paradoxically,universally true-that all people are limited by the particularities of their life experience.”27 The reality that all people are particular and limited in our knowledge and perspectives is something shared by all humanity. This fact shows again how deeply we need one another’s stories, experiences and wisdom in order to arrive at adequate social norms. The descriptions, philosophies, theologies and perspectives of an individual or a relative few will not suffice. Human beings are forever and inescapably interdependent creatures.

[56] Having said this, it is also imperative to recognize that some forms of relationality and interdependence are more desirable than others. Some structures and practices actively promote justice, health and right-relation. Others capriciously prey upon the needs of some while simultaneously profiting from the resources they possess. Undeniably, suffering, abuse and exploitation occur across cultures, societies, and nations. In the case of this research, U.S. healthcare quality disparities are a problem for which lighter skinned and affluent communities (found at all levels of government, healthcare institutions, insurance companies and lobbyists) are most pointedly accountable.

[57] While the process of arriving at normative conclusions is arduous and fraught with thorny complexity, theological and social ethicists nonetheless have a responsibility to offer persuasive and compelling visions that carry normative weight and that hold privileged communities accountable. What is needed now, both in academic circles and also in the larger society, are thorough descriptions of present social realities along with constructive proposals for what ought to be and for how people ought to be regarded. Roman Catholic white feminist ethicist Margaret Farley understands that:

An obligation to respect persons requires . . . that we attend to the concrete realities of our own and others’ lives . . . . We can risk considering seriously the meaning the other gives to the world; building communities of support that have openness to the other at the center of their strength; surrendering our tendencies to omniscience without surrendering to despair; learning the particular content of just and fitting care.28
Respect for persons and difference does not negate the possibility of making normative claims. Human beings-as moral agents facing daunting and myriad injustices-dare not give up on creating pragmatic strategies and conceptual frameworks which foster right relationship among human communities living in a fragile and precious creation. Ventures into theological and social ethics are not sufficient if they stop at the place of description and deconstruction of present realities. We must also take the risk of offering constructive, bold and hope-filled vision.

[58] As Copeland asks questions about differences, commonalities and solidarity, she articulates concrete measures by which to assess if the full humanity of persons is being respected or not. For insight into these questions, she turns to an understanding of the demands and obligations, which human beings (specifically Christians) must bear as fitting responses to the incarnation of the divine. In doing so, she offers the following description of human identity that is inextricably woven together with human responsibility:

Our search for the humanum is oriented by the radical demands of the incarnation of God; . . . [T]o be a human person is to be (1) a creature made by God; (2) a person-in-community, living in flexible, resilient, just relationships with others; (3) An incarnate spirit, i.e., embodied in race, sex, and sexuality; (4) capable of working out essential freedom through personal responsibility in time and space; (5) a social being; (6) unafraid of difference and interdependence; and (7) willing daily to struggle against “bad faith” and resentment for the survival, creation, and future of all life . . . Taken together, the various theologies for human liberation push us, in self-giving love, to forward this realization in “the forgotten subject”-exploited, despised poor women of color. Only, in and throughsolidarity with them, the least of this world, shall humanity come to fruition.29
In this description, Copeland makes the connections between theology, anthropology, social analysis and ethics explicit. The full meaning and implications of these points may only be spelled out in particular communities of dialogue and action. What is clear is who is the normative anthropological subject. The test, then, will be if social, theological and medical ethics can remember this “forgotten subject” and if, in doing so, transformative practices, institutions and communities are creatively fashioned by imperfect yet beloved human beings working together for the sake of those most in need of love and care.

[59] Sophia’s words show the kind of contribution theological language can make in shifting the terms and frameworks for healthcare discussions. She spoke eloquently about what God wants from and for human beings. I asked her how she thinks God wants human beings to treat each other. She answered:

What does God want human beings to do for each other? That’s an easy one, although it’s hard to practice sometimes. Everybody is supposed to be more Christ-like . . . That means that we’re supposed to . . . . treat each other kind. We are each other’s keeper. And everything that I feel I deserve, you deserve. I mean, that’s what God wants us to do. We’re supposed to treat each other with humility. We’re supposed to treat each other with kindness, with sympathy, with affection. This is what we’re supposed to do . . . And we’re here to take care of each other. And if somebody-if we don’t take care of each other, we’re not taking care of ourselves. There’s no way around it. We’re all one people. There’s no way around it. Anything that you do to me that isn’t right, you’re saying that it’s okay-you’re saying it’s okay for it to be done to you. Right? I mean, okay, we have all this medical profession, and it’s all well and done. The world in itself was made perfect, and there’s a natural remedy for everything anyway. So we made up all of these other things around it, and we’re wrapped up around it. But let’s just keep it real. And that’s what God wants us to do. And all of our creation, and all of our manmade things, we still, at the end, as human beings, have to keep it real.
[60] I asked, “And how do we keep it real?” Sophia answered:

By not getting caught up in all of that, and remembering at the end what it is that matters, and that is life. That is human life. And how it is that we’re treated, and how fragile it is, and how much we can just lose it. At a blink of an eye we can be gone. And it all revolves around love. And love is, you know, a big thing when you think of everything that’s thrown in there. It’s hard to have unconditional love for strangers. You know? In a perfect world, that’s exactly what it should be, though. Because we are-we’re all blue blood until it comes out of our body. I mean, it’s just-but that’s in a perfect world. I mean, that’s like, in this world right now, that’s a fantasy. But that would be ideal, right? And I think that’s what God would want. And He gave us the power of choice . . .
While she clearly sees the harshness of this world, Sophia also stays grounded in what is most real and in what most matters. She has not allowed the language and structures of meaning within corporate healthcare define ultimate meaning for her. Even if it means swimming upstream against strong financial, cultural and ideological currents, human beings have a choice. Sophia reminds us that God has given us all a crucial choice regarding how we will live, what we will value and how we will treat others. No singular entity-whether philosophical, scientific, bureaucratic, or biomedical-has the right to dominate the terms and frameworks for discussion of such critical matters.

[61] The breadth and depth of healthcare quality disparities for darker skinned peoples and members of lower socio-economic classes communicate something important about how we as a society value human life. These disparities affect people when they are not only generally vulnerable within the structures of society, but when they are acutely vulnerable-when they are seriously ill. Those of us who are Christians profess faith in a God who knows and loves each strand of hair on each human head. We are called to love God and to love one another as ourselves. Thus, such disparities in care represent both a moral and theological crisis. Simply put, we are not seeing or loving our neighbors as fully as we ought.

[62] A distinctive and important kind of learning can happen when human beings faithfully and descriptively hear and re-tell stories-whether they are scriptural, their own, or from another’s life experience. Such listening can facilitate a kind of transformation within both the intellect and the heart of the hearer. In short, what I have attempted to do is to help close what can be a cavernous gap between abstracted numerical realities and the concrete lives of people with respect to healthcare quality disparities.

[63] To do so, I have listened to just a few stories from a very few people, from Latina and Black women with breast cancer and from healthcare providers. My prayer is that my re-telling of their stories and perspective has been faithful and that it has neither idealized nor demonized any of them. The critical thing is that they are neither heroic exemplars nor utter failures, but human. The beauty is that they are unique and ordinary members of the human species. I hope that substantive reflection on these few individuals might help those who read this text to not lose particular peoples in the generalities and statistics of our times.

[64] Indeed, I have seen professionals pass over statistics without being moved by them. One of my questions has been, “How do you get through to people?” It is relatively easy to post a set of principles on the wall which lists every patient’s bill of rights to respect and to being treated with dignity. It is not as easy to embody them consistently-on both interpersonal and structural levels. While policies and laws can regulate much (never all) external behavior, they cannot legislate the kinds of interactions, relationships, attitudes and efforts that will make such respect and concern for dignity most deeply embodied and concrete. A genuine commitment to seeing people in a new light is a fundamental part of creating justice and social transformation.

[65] While I have learned much from these collaborators, I cannot offer any perfect solutions for safeguarding human dignity across time and location. It is wise to recognize, as Ivone Gebara does, “We have no consistent record of humanity’s progressing in virtues and moral values. Instead we have the impression that at each moment of our history, we have to learn all over again the meaning of giving and receiving respect.”30 My goal is not to create a universal ethical framework, but rather to add one additional way for individual and communal moral formation and discernment to happen that helps us to keep re-evaluating our tentative embodiments of larger ethical norms. Again, in Gebara’s poetic words:

To love the other as oneself has to be understood in concrete situations in which each individual, whether among community, friends, family, or work associates, is ethically obliged to place himself or herself within the skin of the other. A mutuality takes hold and transcends any principle or judgment deriving from already established dogmatic laws. We have to construct among different groups provisional agreements, always capable of revision, in order to allow the common good to be effective, not just a beautiful expression stated in a document, like the Universal Declaration of Human Rights, that lacks any force.31
Time and time again, human beings-moral agents-have to translate and implement what it means to love truly and deeply our neighbor as ourselves. This is our common gift and task. While humbling, it seems most honest to stay grounded in the dust, joy and particular dynamics of the times and places in which we find ourselves.

[66] To discover anew what respect and love mean in the concrete is not simply an intellectual assent; rather, a conversion to love is required. Through meaningful encounters with those who most directly confront healthcare disparities and inequalities, perhaps we-social, theological and bio-medical ethicists along with those who work in healthcare-might not only learn about the disparities, but might also turn anew to our neighbor and glimpse the sacred. Equally important, perhaps this kind of learning will contribute not only to the amelioration of human suffering, but also to our own moral and vocational re-formation. Perhaps we will discover more concretely what it means for us to be responsible, accountable and present to another.

[67] Latina and Black women with breast cancer have much to teach the larger society about healthcare quality. This knowledge embedded within their particular experiences may contribute a vital measurement for assessing the adequacy of healthcare policies and practices. Knowing one counts among the living can mean the difference between life and death, between healing and alienation, between redemption and despair. My deep hope is that attentive listening to those most vulnerable might make U.S. healthcare more humane for all persons.

End Notes

1 Since I began this research, it has been pointed out to me a few times (interestingly always by white academics or professionals) that white working class, the white poor, and whites living in rural areas also suffer a lack of healthcare due to socio-economic assumptions and barriers. Undeniably, these lighter skinned populations are at risk and merit attention. However, the fact that they too are vulnerable ought not be used to deny or obscure the particular vulnerabilities of darker skinned communities.

2 There is a fast-growing body of texts and curricula on this topic. Here are just two examples: Larry D. Purnell and Betty J. Paulanka, Transcultural Health Care: A Culturally Competent Approach, 2nd Ed. (Philadelphia: F.A. Davis Co., 2003); Bette Bonder, Laura Martin, and Andy Miracle, Culture in Clinical Care (New Jersey: Slack Inc., 2002).

3 In a future project, I would like to analyze various cultural competency models utilized by medical and nursing schools in order to discern what may be the most rigorous and transformative models.

4 Mary-Jo DelVecchio Good, Byron J.Good, et al., “The Culture of Medicine and Racial, Ethnic, and Class Disparities in Healthcare,” in Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, Institute of Medicine (Washington: National Academy Press, 2002), 620.

5 Wanda emphasized that hospital leadership needs to a lead in making the changes part of the institutional culture:

(W)hen I worked in a hospital, we used to speak with the interns. And the first thing the social workers would do was, you know, give them a speech. And then, you know, they would leave and go to their-through their own same old stuff. But then they had doctors who were over them, teaching them, who didn’t have bedside manners. So, I mean, you would need to get to the root of it, you know, the top doctors who are doing the teaching.
6 Beef Stew later commented:

When you put money, and when you put power behind that change? . . . When you make the price high enough that when you don’t do it, you’re going to feel it, guess what, change is going to come. And that change will happen when you get a black head nurse, when you get a Hispanic CEO, when you an Asian board of trustees . . . . Okay, when you start reflecting diversity that way, on a high level, then guess what, that’s when the change is going to come. Until then, you can put all the black staff nurses and all the Asian doctors and Hispanic whatever, anywhere you want.
7 Associated Press, “Report Urges Diversity in Health Jobs,” 5 February 2004. They cite from newly published Institute of Medicine Report, In the Nation’s Compelling Interest: Ensuring Diversity in the Health Care Workforce, available online.

8 Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, 114.

9 Robert Pear, “Taking the Spin Out of Report that Made Bad into Good Health,” New York Times, 22 February 2004, online: www.nytimes.com.

10 Recall the article: H. Jack Geiger, ” Why is HHS Obscuring a Health Care Gap?” Washington Post, 27 January 2004, A17.

11 Good and Good, et al., “The Culture of Medicine and Racial, Ethnic, and Class Disparities in Healthcare,” 599.

12 Beef Stew confided:

I will say-and maybe this is a bias-but I will say that, when I see a person of color, and it doesn’t have to be a African American, can be Hispanic, Asian, you know, Middle Eastern person, anyone, a person of color who is especially disadvantaged, like may have Medicaid, no insurance, worker’s comp, no fault, I tell you, I do go out of my way and work a little harder in regards to making sure that they understand the process. Because usually people that may be disadvantaged or indigent, poverty-stricken, maybe not educated and affluent, they don’t know the process. And sometimes they’re lost in it. Versus people who have really good insurance, you know, and who are rich and everything, and are affluent, well, they know the system.
13 A recent investigative reporting article by Katherine Boo recounts the story of Juana, an uninsured woman in Texas who died at the age of 36 of cervical cancer, two years following her diagnosis. Because she had no insurance, she was shut out of all of the for-profit hospitals near her in Cameron County, Texas. From the article, I believe Juana was not an undocumented inhabitant. Boo reports:

While federal law requires those hospitals to treat the uninsured in emergencies-gun shot wounds, heart attacks-the institutions usually decline to accept uninsured supplicants who need chemotherapy, radiation, or other longer-term treatments. Juana, like most uninsured patients with advanced cancer in Cameron County, had to travel back and forth to the state public hospital in Galveston. It is an eleven-hour bus trip each way. (Katherine Boo, “Letter from South Texas: The Churn,” The New Yorker 29 March 2004, 72.)
Texas has the highest rate of uninsured of any state in the union.

14 Emilie Townes explores models of care that developed within and are particularly attuned to African American communities. Her analysis offers important alternatives to western cultural productions of health and also includes several constructive examples of African American community programs and education strategies. See townes, Breaking the Fine Rain of Death, 147-167.

15 It is important to note that as of this writing, Hannah Jacobs lost her job after over twenty years of service due to corporate down-sizing. While I do not know the specifics of her prior company’s situation or firing, it is reasonable to entertain the possibility that the high costs of health insurance for full-time employees figured in, at least in part, to the company’s decision to cut back on staff numbers. If this were the case, it highlights the fact that in present healthcare and business climates, even those who are presently insured are not exempt from the threat of losing such coverage at any time.

16 Leonard’s internal conflict on the matter of universal health coverage was apparent:

(I)f everyone is flatly salaried, then regardless of what you do, either in quantity or quality, then the forces are in place to do as little as possible . . . However, having said that, I think that we really all should be salaried, that there should be some kind of universal infrastructure, so that as physicians we are adequately compensated, and then have a little bit less or fewer administrative hassles. So, I do think that we need some type of national, you know if not, you know, national health insurance, some type of national healthcare system where we are adequately and appropriately compensated. . .
17 James P. Spradley, The Ethnographic Interview (New York: Holt, Rinehart and Winston, 1979), 3.

18 Ibid., 4.

19 Ibid., 18-22.

20 Ibid., 24.

21 Cynthia Moe-Lobeda, Healing a Broken World: Globalization and God (Minneapolis: Fortress), 121.

22 She writes: “In this solidarity, the Creator is worshipped, the humanum honored, particularity engaged, difference appreciated. Solidarity affirms the interconnectedness of human be-ing in common creatureliness . . . Humanity is one intelligible reality-multiple, diverse, varied and concrete, yet one.” M. Shawn Copeland, “The New Anthropological Subject at the Heart of the Mystical Body of Christ,” CTSA Proceedings 53 (1998): 42.

23 Ibid., 31-32.

24 See Jennifer Harvey, Karin Case, Robin Hawley Gorsline, eds.; Disrupting White Supremacy from Within: White People on What WE Need to Do (OH: Pilgrim, 2004).

25 On this point, Beef Stew encouraged me to see the film, A Day in Black and White, which treats the differences in perception between Black and white people.

26 Wanda continued:

And I think that’s what helps me, that I can look at myself and say I don’t want to be like that; or if I did something, I can just, you know, pray about it, and ask God to forgive me for that, and change, you know, work towards the changing, you know, because I am not perfect. And I pray every day that when I walk out of my house, that I could, you know, I would treat people with respect, that I will not look down upon people, you know, wherever-wherever I’m working and wherever I’m going . . . Or, if I did something to someone, you know, that may have offended them, I can go to them and just, you know apologize or something like that.
27 Carter Heyward, Touching Our Strength: The Erotic as Power and the Love of God (San Francisco: Harper & Row, 1989), 9-10.

28 Margaret Farley, “A Feminist Version of Respect for Persons,” in Feminist Ethics and the Catholic Moral Tradition, Readings in Moral Theology, edited by Charles Curran and Margaret Farley (New York: Paulist Press, 1996), 179.

29 Copeland, “The New Anthropological Subject at the Heart of the Mystical Body of Christ,” 34-35.

30 Ivone Gebara, Out of the Depths: Women’s Experience of Evil and Salvation (Minneapolis, Fortress Press, 2002), 96.

31 Ibid., 142.