Issue 17

Whose health matters?
March 2013

~Contents~

Introduction: Yes, your health matters--now please get in line
Ryan Anderson

The Commodification of Celebrity Health
Tazin Karim

Health Inequalities: Structural Violence and Invisibility
Jennifer R. Wies

 Medical Authority and Queer Health Disparities
Will Robertson

Dependency & Mistrust of the Medical Community: The Experiences of Parents of Deaf Children in Mexico City
Anne Pfister

Substance Abuse Treatment: Maintaining the Status Quo?
Lesly-Marie Buer

The Long War: Continuing Battles Over Equity for Children With Disabilities
Gregory J. Williams

Biopolitics of Infant Mortality
Monica J. Casper

Stigmatization in Psychiatry: For the Discipline and for the Patient
Carla Pezzia

International adoption medicine and inequality in pediatric health care
Emily J. Noonan

Reflections on a Dialogue between NM & CMA: Holism on the Ground
Sean Tangco, Erik Hendrickson & Samuel Spevack

Oportunidades: Co-responsibility and the Politics of Health Care in Mexico
Veronica Miranda



Photo: Pharmacy, Oaxaca City, Mexico 2008.  By Veronica Miranda.

International adoption medicine and inequality in pediatric health care

Introduction

Over the past six months, I've seen about thirty children diagnosed with diverse medical problems: tuberculosis (TB), ADHD, cleft lips and palates, blood parasites, gut parasites, failure to thrive, unexplained scars, missing and malformed limbs, severe developmental delays, and malnourishment. These kids were born in Russia, Ukraine, Ethiopia, Uganda, Haiti, South Korea, China, the Philippines, India, Hungary, and Guatemala.

This medically and nationally diverse group of patients is found in the pediatric sub-specialty of international adoption medicine. I am conducting ethnographic fieldwork in one such adoption medicine clinic located near a large, Midwestern U.S. city.

My goal in this piece is to highlight one type of inequality built into contemporary pediatric health care in the United States: the differential treatment of similar populations. This inequality is made visible by juxtaposing international adoption medicine with health care available to other groups, particularly children of immigrant adults and child refugees.

International adoption and adoption medicine

At international adoption’s height in the mid-2000s, nearly 23,000 children a year were entering the U. S. Most children were young (under two years old) and relatively healthy.

International adoption looks very different now. Changes in international law, global economic crises, and nationalist debates and changing adoption policy within birth countries have led to a steep decline in the number of healthy infants available for adoption. In government fiscal year 2012 (October 2011-September 2012), just 8,668 foreign-born children were adopted by U.S. citizens (Office of Children’s Issues 2013).

At this stage in the history of international adoption, many adoptees are older, have spent significant time in institutional settings (orphanages), or are "special needs." In this context, “special needs” is a catch-all term used to indicate a range of possible descriptors: children described as “special needs” may have medical disorders, have exhibited behavioral problems, are developmentally delayed (as measured by Western standards), or are part of sibling groups.

In the 1980s and 1990s, as the number of internationally adopted children entering the U.S. was steadily rising, physicians and other medical professionals—many of them adoptive parents themselves—began epidemiological research on children adopted internationally. They recognized that the needs of internationally adopted children were not being adequately addressed by existing pediatric practice.

The American Academy of Pediatrics created a Section on Adoption and Foster Care in 2000, and the group—now called the Council on Foster Care, Adoption, and Kinship Care—has several hundred members (American Academy of Pediatrics n.d.). The focus on infectious disease, the care of post-institutionalized children, and calls for pediatricians to recognize the specific needs of internationally adopted children mark the beginning of what has coalesced into international adoption medicine. The typical international adoption clinic treats the infectious and developmental disorders seen as particular risks for internationally adopted children: TB, HIV, hepatitis, parasites, nutrition deficits, attachment disorders, developmental delays, and fetal alcohol syndrome. Children who have lived in orphanages or institutions other than family or kinship care are at greatest risk.

Adoptive parents are advised that their adopted children should be seen by a physician (preferably one who specializes in adoption medicine) as soon as possible upon entering the country. What happens in this initial screening? The list below is specific to the clinic in which I am doing my research, but is comparable to the activities that occur in most international adoption medicine clinics:

• Comprehensive history (to the best of adoptive parents’ knowledge)
• Full physical exam by nurse
• Developmental assessment by an occupational therapist
• Discussion with social worker
• Exam and discussion with doctor
• TB skin test
• Test blood for vaccine titer levels
• Screen blood for parasites, HIV, syphilis, Hepatitis A & B
• Screen feces for parasites 

Children who need additional treatment are seen a month later. All clinic patients are advised to return six months later for an abbreviated exam and infectious disease screening. Some children have additional follow-up visits for treatment of infectious disease, parasites, problems with development, mental health disorders, or if they are having difficulty in school.

Given the breadth of disorders they must be familiar with, international adoption medicine doctors come from a variety of pediatric specialties. These include infectious disease, public health, tropical/global medicine, development and behavior, psychology, and psychiatry. In addition to medical doctors and nurses, the usually includes social workers and occupational, physical, and speech therapists. One of the primary roles of the adoption clinic is to make referrals to other specialists and connect children with appropriate early intervention services.

The sub-specialty of adoption medicine has grown; by my census, there are now over two dozen clinics in the U.S. serving internationally adopted children and their adoptive families. Just as the practice of international adoption has undergone a transformation, so has adoption medicine. With far fewer healthy infants entering the U.S., the patients seen in adoption medicine clinics are increasingly older and have greater special needs. [1]

Migrant care and international adoption medicine

The conditions affecting internationally adopted children are strikingly similar to those found in other pediatric populations—immigrant children, migrant children, refugees, children under state care in foster or group homes, and children living in poverty—but those populations are rarely treated in specialized clinics. My focus here is on health care for immigrant children, which includes documented, undocumented, and refugee children.

It is well established that immigrant children are in poorer physical health than are non-immigrant children, and that immigrant children are underserved by the U.S. health care system (Huang, Yu, and Ledsky 2006). Health organizations also recognize that immigrants, refugees, and the children of migrants need targeted care. The American Academy of Pediatrics’ policy statement on Immigrant, Homeless, and Migrant Children notes that these children are at greater risk for certain diseases and outcomes—infectious disease, anxiety, grief, developmental delays, etc.—and asks pediatricians to be aware of the needs of immigrant, migrant, and homeless children in their care (Committee on Community Health Services 2005). While refugees and documented immigrants are required to undergo a medical exam before coming to the U.S., this medical care is not comprehensive or ongoing. There are few clinics devoted to the health of immigrants and far fewer specializing in health care for child immigrants.

In this policy statement, the AAP groups internationally adopted children with immigrant children, but for the sake of clarity here, note that I’m differentiating between internationally adopted children (who are immigrants of a kind) and children who come to the U.S. with one or more parents. As orphans being adopted by U.S. citizens, adopted children have citizenship. Other immigrant children are in the U.S. with or without documentation.

Just as the AAP and other health care institutions recognize the special needs of all immigrant children, so do many adoption medicine practitioners. In general, the medical professionals who make up international adoption medicine are concerned about the health of other internationally-born immigrant children, as well as the health of U.S.-born children residing in foster care or other institutions. The practitioners I’ve talked with see that their expertise in the diseases and problems common to international adoptees could easily be extended to other pediatric populations.

Admittedly, the needs of internationally adopted children are not identical to the needs of other immigrant children. Adopted children may have unique developmental challenges resulting from institutionalization, especially in terms of attachment and cognitive functioning. However, other immigrant children, especially those who have experienced extreme poverty, family disruption, and violence face similar challenges.

On rare occasions, adoption clinics do see immigrant children and U.S.-born children in foster care. During the time I’ve been involved with research at the adoption clinic, the practitioners have seen several children who are not international adoptees. In one case, a mother and her four children went to the emergency room at the local children’s hospital. This refugee family was from Central Africa and spoke no English. The ER was able to address the immediate problem, but could not provide the screening and primary health care all of the children needed; it was clear that the children were in need of prompt and comprehensive care. Knowing that the adoption clinic was seeing patients the next day and that the clinic staff would be able to thoroughly evaluate all of the children, an ER staff member referred the family to the adoption clinic.

These children were strikingly similar to international adoptees, especially those from Central Africa. The kids showed signs of long-term malnutrition and the clinicians considered them at risk for TB, other infectious diseases, and parasites. And like adoptees, they needed to be re-screened six months later, as many diseases don’t appear until some months after infection.

This referral and others like it border on accidental. If it had not been for an employee who knew that the adoption clinic staff might have the expertise to treat these children, they may not have received the primary and specialized care they need. Pediatric care in the U.S. lacks the infrastructure to fully address the needs of all immigrant children. So why is it that there’s a safety net—in the form of a subspecialty and a widely articulated rationale for this subspecialty— for internationally adopted children but no such safety net for similar groups of children?

I see several reasons for this peculiarity: health insurance, documentation, and parental status. U.S. citizens adopting children must meet proscribed standards, including the ability to provide health care for the child, so nearly all internationally adopted children have private health insurance provided by adoptive parents. Unlike children in some similar pediatric populations, in almost all cases internationally adopted children enter the U.S. health care system with U.S. citizenship established. While health care—especially health care for children—should not depend on citizenship, in practice it often does. Immigrant families that are undocumented may be reluctant to engage with the public health system, especially in regions with strong anti-immigrant sentiment.

Parental status is critical here. By status, I mean the parent’s education, relative wealth, occupation, language, and comfort with the health care system. Parents of internationally adopted children are overwhelmingly white and wealthy by global standards. Most of the families I have encountered in the clinic include at least one parent who holds a white-color or professional job. Adoptive parents have also successfully navigated the “paper chase” of the adoption process. To many, the bureaucracy of U.S. health care pales in comparison to the overlapping bureaucracies of state adoption agencies, the U.S. State Department, international treaties, governments of birth countries, and orphanages and foster homes.

When the refugee family I discussed above visited the adoption clinic, one of the practitioners remarked that she was concerned about the children’s future because, in addition to their already poor health, they did not have a parent who could advocate for them. This mother speaks no English and must depend on others for the transportation, money, and knowledge needed to access the pediatric health care system. In other words, most parents of internationally adopted kids have the cultural capital that makes it easier to engage with and navigate health care institutions.

In several ways, immigrant children’s access to pediatric care depends on whether the child belongs to a certain kind of family. To be a part of a documented, citizen family means that specialized medical care is accessible to the immigrant child.

Differential care received by these similar pediatric populations both exposes underlying structural inequalities in the U.S. health care system and reveals how medical practice intersects with citizenship and privilege.

There is hope for resolving this discrepancy. The subspecialty of international adoption medicine developed rapidly in response to an emergent population with special needs. The interest among practitioners in serving all immigrant children points to possibilities for expansion of the field.

Emily J. Noonan is a doctoral candidate in anthropology at the University of North Carolina at Chapel Hill.

Notes

1. For comprehensive overviews of international adoption medicine, see Albers 2005; Miller 2005.

References

Albers, Lisa H., ed. 2005. International Adoption: Medical and Developmental Issues. Theme issue, Pediatric Clinics of North America 52(5).

American Academy of Pediatrics. n.d. Section on Adoption and Foster Care. , Accessed March 7, 2013.

Committee on Community Health Services. American Academy of Pediatrics. 2005. Providing Care for Immigrant, Homeless, and Migrant Children. Pediatrics 115(4):1095-1101.

Huang, Zhihuan Jennifer, Stella M. Yu, and Rebecca Ledsky. 2006. Health Status and Heath Service Access and Use Among Children in U.S. Immigrant Families. American Journal of Public Health 96(4):634-640.

Miller, Laurie C. 2005. The Handbook of International Adoption Medicine: A Guide for Physicians, Parents,and Providers. New York: Oxford University Press.

Office of Children’s Issues. U.S. Department of State. 2013. FY 2012 Annual Report on Intercountry Adoption, Accessed March 7, 2013. 2013. 

*Edited for clarity on 6/7/2013

Stigmatization in Psychiatry: For the Discipline and for the Patient

Psychiatry is often labeled the “black sheep” of medicine. The continued inability to pinpoint a singular causal mechanism for mental illness spurs the anti-psychiatry movement to argue for the removal of psychiatry as a sub-specialty from the medical field. The assumption underlying this movement is that all mental illnesses are psychological, despite the clear biological/neurological processes that are proven to be associated with various mental disorders. As such, there is no apparent medical justification for psychiatry to remain within the overarching discipline of medicine. The validity of such an assumption is clearly debatable, but this general attitude is often reflected in the lack of funding support for psychiatric services and the socially-derived moralistic stance toward particular mental disorders, such as substance abuse. This, in turn, has clear implications for the mentally ill patient who by extension may be seen as the “black sheep” of the patient realm. A primary care physician insensitive to the neurological mechanisms of mental disorder may be more prone to dismiss the suffering of the mentally ill patient as purely psychological, or “all in their head.”

Let’s take the mentally ill patient in Guatemala as a case in point. I have worked in the Western Highlands of Guatemala for over six years, and my most recent research venture for my doctoral dissertation examined local psychiatric/psychological concerns and the barriers to mental healthcare in the region. My findings suggest that the mentally ill patient faces both community and institutional stigmatization based, in part, from the disparaging attitudes toward psychiatry as a medical discipline. Of course, there are clear historical and cultural contexts to consider for the foundation of the community level stigmatization. A biological basis for mental illness is a relatively new concept within health belief systems in some of the more “traditional” communities throughout the Highlands. However, biomedical understandings to illness in general are becoming more prominent, and according to my research, those who suffer from mental illness themselves are more likely to prefer biomedical/psychiatric treatments to manage their disorder over previously accepted treatment modalities. Therefore, I want to focus on the role of the institutional/disciplinary stigmatization as manifest in the public healthcare system that appears to reinforce community level discriminatory beliefs toward mental illness.

Psychiatry is an acknowledged discipline within the medical field in Guatemala, yet psychiatric services appear to be the least valued, which directly impacts access to healthcare for the mentally ill. Specifically, mental healthcare in Guatemala is underfunded, poorly staffed, and inaccessible to most Guatemalans, despite a relatively high rate of mental health conditions. Recent national studies indicate that one of every three Guatemalans suffers from a mental illness. However, the Guatemalan government spends less than 1% of their overall health budget on mental health services, [1] and the one public psychiatric hospital is notorious for human rights violations. Indeed, the majority of human rights violations reported to the Attorney for Human Rights Office are in direct reference to this hospital (PDH 2010). These reports indicate safety abuses by personnel, inadequate patient nutrition, insufficient availability of medications, deteriorating equipment, and general inadequate conditions (PDH 2010).

Due to the failure of authorities to adequately respond to such known abuses and the overall shortcomings within the public health system, national health care services are becoming more privatized within Guatemala. While this is a general (and global) trend for all of healthcare, the mentally ill are even further marginalized by this transition. Private for-profit physician services are financially out of reach for the majority of Guatemalans, particularly in impoverished areas found throughout the Highlands. Non-profit non-governmental and faith-based organizations that provide supplemental free/low-cost health services rarely, if ever, address the mental health needs of their service population. The primary mechanisms for healthcare support through these institutions are visiting short-term medical mission groups. The services these groups provide are generally limited to basic medical and/or surgical needs. The most commonly provided services include eye exams and minor ocular procedures, dermatological and gastrointestinal evaluations, and reproductive health procedures such as pap smears, hysterectomies/vasectomies, and IUD placement. Mental health issues and chronic diseases are unlikely to be addressed due to the short-term nature of these visiting groups of medical service providers. 

Yet local political leaders from mayors to sector representatives often say that the available resources for mental illness are sufficient. They indicate they have no control over the private sector, and there are no plans for developing more public services to care for the mentally ill. Local public health centers often provide a space for psychiatry/psychology graduate students completing internships as their labor does not cost the center anything, but it is a rare event for students to want to complete their internship in the region due to the lack of jobs available once done. The implication of this degree of inadequate mental healthcare within both the public and private sectors suggests that the mentally ill patient is not worthy of economic support to alleviate their suffering.

Compounding the lack of financial support for psychiatric services are the institutionally reinforced notions of mental illness as a manifestation of moral disorders as opposed to biological ones. As mentioned previously, mentally ill patients suffering from substance abuse in particular must also contend with moralistic stances that undermine the neurological and physiological processes associated with the disease. Alcoholic and addict individuals are regularly encouraged to seek help in churches or Alcoholics Anonymous (AA) group. Even trained physicians [2] will “prescribe” church attendance and/or AA as treatment for alcoholics and addicts. That is all they need, says a regional public health director who is a trained physician. The director suggests that the primary benefit to both church and AA is the fact that the programming does not cost anything to the State. 

The fact that these “treatment” avenues have been proven to be minimally effective in eliciting behavior change is irrelevant. The use of public funds to support alcohol/drug abuse intervention programs would be considered a misuse of funds. Alcoholic/addict individuals are generally considered perdidos (lost causes) and untrustworthy to change; in essence, black sheep. Yet alcoholic individuals in the region often expressed to me their desire for psychiatric services to address the neurological processes underlying their addiction.

These issues within psychiatric care are not specific to Guatemala. Mental healthcare systems throughout the globe, including in the US, are generally considered underfunded and inadequate to meet the needs of the local population. The debate at the professional level regarding psychiatry’s role within the medical profession dismisses the desires of individuals for appropriate psychiatric services that take into account both the physiological and psychological aspects of mental illness. Unfortunately, until psychiatric services receive more complete visible support (e.g., through adequate funding), the discipline of psychiatry and psychiatric patients themselves will continue to be casted as the “black sheep” of the biomedical world. It is only through understanding local stigmatizing conditions and advocating for comprehensive psychiatric services that the suffering of those with mental illness may be alleviated.

Carla Pezzia
University of Texas at San Antonio

End Notes

1. Developed countries, on average, spend 5-9% of their overall health budget on mental healthcare. These countries, on average, also have less prevalence of mental illness within their population. Guatemala and the US have approximately the same prevalence of mental illness (1 in 3). The US spends approximately 5% of the overall health budget on mental healthcare, and this is still not considered sufficient to address the needs of the population.

2. All medical students in Guatemala, regardless of their specialty, must go through a psychiatry rotation as part of their training.

References

PDH (Attorney for Human Rights Office). 2010. [Special Report on the Right of Every Person to Receive the Highest Standard of Care for Physical and Mental Health: The Right to Health]. Procurador de los Derechos Humanos, Guatemala.

Reflections on a Dialogue between NM & CMA: Holism on the Ground

What is holistic health? This question was the focus of a recent dialog between critical medical anthropologists (CMAs) and naturopathic doctors (NDs) staged in a special issue of Medical Anthropology Quarterly (v.26, no.2). To summarize, each side has a different viewpoint on what true holism comprises. CMA sees health as determined holistically by sociopolitical and economic factors that pattern human behavior and human ecology while naturopathy sees health as a state of holistic balance between an individual’s mind, body, and spirit (Baer et al 2012); NDs subscribe to vitalism and assume that everyone has an innate capacity to heal oneself under certain circumstances as a unified mind-body-spirit. CMAs subscribe to critical theory and assume that a person’s health is a product of local-national-global power relations.

Although the dialog is well-needed, as ‘holistic health’ is generally used too vaguely to be useful theoretically, we contend that keeping the debate to specific disciplinary agendas without grounding the understanding in a user perspective is limiting. We believe that a user-grounded perspective is necessary if scholars are to craft and agree upon a clearly delimited way to understand and deploy the term.

We found, in the dialogues by Baer et al. (2012) and associated responses by other scholars (Tippens et al. 2012; Evans 2012; Hunter 2012; Calabrese 2012; Hess 2012; Flesch 2012; Jordan 2012; Baer 2012), that both CMA and naturopathy aim to create a holistic approach to health, but that each saw the other as maintaining a self-limited scope. CMA critiqued naturopathy, along with other complementary and alternative medicine practices, for being too focused on the individual and not addressing the sociopolitical and economic institutions and structures that pattern health politics. Naturopathy critiqued CMA for ignoring the individual as an agent for sociopolitical and economic change.

We concur with Tippens et al. (2012) that “the two fields have common goals, and, with improved understanding of similarities and differences, have much to offer to one another. Each can learn from the strengths of the other to enhance health care delivery” (258). However, the historical differences that have shaped each discipline leave the two highly dichotomized and seem to mitigate creating a satisfactory definition of holistic health.

While both parties provide an important perspective, and each discipline can carry forward applying its own philosophies, the distinction between them may be academic: that is, it may be elided in real world practices. In other words, the excessive concentration on their respective disciplines and actual behaviors may have caused the scholars in this debate to neglect the voices of those who are seeking health. We contend that the individual who is searching for health care, either for him- or herself or for those he or she cares for, occupies the crossroads between mind-body-spirit and political economic experiences and concerns.

To better understand holistic health, we propose to take into account the seeker’s point of view. We have been granted the opportunity to do just that using data from EJ Sobo’s Healthy Child Development Project (e.g., Sobo 2013), which explores the developmental pediatric framework undergirding Waldorf education from both teachers’ and parents’ points of view (Waldorf education is an independent alternative to public schooling). The project entailed ethnographic observations in classrooms, focus groups, and interviews, some of which served to provide formative data for the development of a home health survey for parents. We helped collect and process parent data for the project, and are assisting with the analysis of the parent data. The analysis is still in its initial stages but so far we have been struck by several themes that we believe may predominate in the data—themes relevant to the dialog between CMA and ND.

The perspective of parents on the topic of vaccinations has been particularly interesting while we reflect upon the holistic health definitions framed by CMA and NM. Here we must note that vaccination was not the study’s focus; parents mentioned it, however, while describing their overall approach to child health. Participants said that delaying or avoiding vaccinations for their children, particularly for diseases such as chicken pox, was not uncommon among Waldorf parents. In vaccination decisions, participants addressed the individual needs of their children while also acting as informed consumers rather than simply bowing unthinkingly to sociopolitical pressures, such as biomedically-oriented health discourse. In the words of one participant in the first focus group, parents in this community are “maybe a little more discriminatory, a little more educated” than those parents who simply follow the doctor’s orders.

In the second focus group, one of the participants again brought up the point that parents in the Waldorf community might opt out of certain vaccinations and focus instead on trying to maintain a good diet and otherwise healthy lifestyle. Here, parents seem to be in agreement with the NM definition of holistic health, and similarly focused on the body’s capacity to heal itself. Accordingly, some also seem to feel that by vaccinating children they might be causing more harm than good. Parents’ recognition of their choice to vaccinate allows them to promote the natural processes carried out by one’s immune system and combat the hegemonic forces of pharmaceutical companies and health policy, which pressure vaccination of children through the education system. As one interview participant noted, “It shows that the parents are individual thinkers and are thinking, and it takes a lot of work to go against the grain of society, you got to sign [waivers] and the parents are talking creatively and individually” [ST-11]. Here, parents are also employing the CMA definition of holistic health as they view themselves as well as others in the community as “individual thinkers,” who are able recognize extra individual forces that are responsible for patterning human behavior.

Indeed, from the participants’ perspective, holistic health seems to be a framework for medical pluralism that places biomedicine and all other forms as equivalent resources to use according to specific and individuated needs. As one focus group participant explained, “It’s not like [it’s] just alternative medicine. It’s sort of this holistic approach, so that every aspect becomes important” [FG1]. In the words of another, “I’m making the choice” [FG1]. Participants would draw on medical modalities according to the specific issues they were facing and the characteristics of the individual child they were caring for. They would assess each child’s needs according to his or her individual history.

While holistic health has recently been differentially defined by CMAs and NDs as either determined by sociopolitical and economic factors or by an individual’s mind, body, and spirit connections (Baer et al 2012), this theoretical division does not seem to sustain in actuality when there are a range of flexible choices for persons to draw on as agents of their own health. Participants in this research seem to transcend the dichotomy presented in the CMA-ND dialogue, employing specific techniques that corresponded with specific health issues. From the transcribed data we have reviewed thus far, this transcendence is recognizable as parents choose whether or not to vaccinate. They seem to draw not on a dualistic framework but instead one of pluralism, and their definition of holistic health hinges on this perspective.

Sean Tangco, Erik Hendrickson, & Samuel Spevack
San Diego State University, Anthropology

References:

Baer, Hans A. 2012.  "Rejoinder: A Long and Convoluted Journey: Medical Pluralism, Naturopathy, and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 299-303.

Baer, Hans A, Cheryl Beale, Rachel Canaway, and Greg Connolly. 2012. "A Dialogue Between Naturopathy and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 241-256.

Calabrese, Carlo. 2012. "An Invited Contribution to 'A Dialogue Between Naturopathy and Critical Medical Anthropology: What Constitutes Holistic Health?'." Medical Anthropology Quarterly, 26.2: 279-282.

Evans, Sue. 2012. "Response to Baer and Colleagues: The Politics of Holism." Medical Anthropology Quarterly, 26.2: 271-274.

Flesch, Hannah. 2012. "Comments on Baer and Colleagues’“A Dialogue Between Naturopathy and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 287-291.

Hess, David J. 2012. "Notes on the Relations Between CAM and the Social Sciences." Medical Anthropology Quarterly, 26.2: 283-286.

Hunter, Assunta Elena. 2012. "Commentary: Naturopathy, Holism, and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 275-278.

Jordan, Meg. 2012. "A Dialogue Between Naturopathy and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 292-298.

Sobo, EJ. 2013. “High physical activity levels in a Waldorf school reflect alternative developmental understandings” Education and Health. 31.1.

Tippens, Kimberly Michelle, Erica Oberg, and Ryan Bradley. 2012. "A Dialogue Between Naturopathy and Critical Medical Anthropology." Medical Anthropology Quarterly, 26.2: 257-270.

Biopolitics of Infant Mortality

It is a tragic “fact of life” that many babies die, often of preventable causes, before they reach their first birthday. My current book in progress, The Quiet Politics of Infant Mortality, focuses on the problem of infant death, an individual and collective trauma that impacts families, communities, and nations. Looking specifically at North America, I investigate the structural relations—including racial and class inequality—that contribute to infant loss, asking a fundamentally biopolitical question: How and why are we letting these babies die?

In 1906, Dr. George Newman published Infant Mortality: A Social Problem, the first comprehensive account linking infant death to social, cultural, and economic conditions. A practicing physician, he was concerned that the infant mortality rate (IMR) in England and Wales was very high between the years 1850 and 1890, despite improvements in other areas of public health at the time. In diagnosing and proposing solutions to this epidemiological mystery, Newman looked to social context, particularly the role of environmental factors (e.g., poverty, sanitation). In an edited volume commemorating the centenary of Newman’s book, Garrett et al. (2006) write, "while we may know far more about certain aspects of infant health than we did 100 years ago, the core of Newman’s thesis remains unchallenged.”

Perhaps more startling than the continuing vitality of Newman’s ideas more than a century post-publication is the epidemiological fact that babies continue to die at high rates, both in the developing world and in pockets of deprivation in the developed world. Even now, in the twenty-first century, modernity and its benefits remain fragmented and unequal. Health and disease are socially produced, and global inequality is a leading factor in worldwide health disparities. This means that typically countries with the fewest resources and the poorest people tend to have the highest infant mortality rates. The further one travels down the list to higher mortality rates, the further one moves from “developed” countries in North America and Europe to those in the so-called “Third World” or global south.

According to the CIA World Factbook, the nations with the worst infant mortality rates in 2012 were Afghanistan, Mali, Somalia, Central African Republic, and Guinea-Bissau. Bottom-ranked Afghanistan reported 121.63 deaths per 1,000 live births (and one can presume that being occupied has something to do with this high rate). The nations with the lowest infant mortality rates were: Monaco in the number one spot with a rate of 1.8 deaths per 1,000 live births, followed by Japan, Bermuda, Singapore, and Sweden. These numbers clearly are linked to structural relations and reflect deep and persistent global disparities. For example, in 2011, 36 percent of the Afghani population lived at or below the poverty line, while the number living below the poverty line in Monaco was too small to register statistically.

Yet there is one oddity in infant mortality rate tabulations, namely how poorly the United States fares in the rankings. In 2012, the U.S. ranked a distant 50th from the top, in-between Croatia and the Faroe Islands. Although considerably lower than the rates of the highest-mortality nations such as Afghanistan, in 2012 the overall U.S. infant mortality rate was 6.0 deaths per 1,000 live births. (In 2002, the first year since 1958 in which the infant mortality rate went up, it was 7.0 per 1,000 live births.) A majority of the approximately 25,000 infant deaths in the United States annually are due to preventable factors such as lack of access to health care, maternal health, and low birthweight/preterm labor.

The U.S. rates are disquieting, as the reduction of infant mortality here was long considered one of the major public health success stories of the twentieth century (Combs-Orme 1988). In 1900 in some American cities, thirty percent of infants died before reaching their first birthday; from 1915 through 1997, infant mortality declined more than ninety percent. Improvements in standard of living and nutrition, advances in clinical medicine, increased educational levels of parents, and better surveillance and monitoring of disease contributed to this achievement, as did a determined policy focus on maternal and child health as embodied in the Sheppard-Towner Act of 1921. Also known as the Maternity and Infancy Bill, the Act’s goal was a reduction in infant mortality through provision of matching grants to states, inspection of maternity homes, and creation of facilities and programs (Ladd-Taylor 1994). As the IMR decreased in the wake of structural improvements so, too, did public attention to the issue and dedicated government resources.

But significant disparities in infant mortality have persisted in the U.S. across racial and ethnic divides. The history of infant mortality in this country is, I suggest, also the history of immigration, race, poverty, and other structural inequalities. Non-white infants, especially African Americans, die at much higher rates in their first year of life than do white babies. In 2008, the mortality rate for African American infants was 13.1 deaths per 1,000 live births, a rate comparable to that of many developing nations. The percentage of newborns at low birth weight—a leading indicator of infant mortality—has risen steadily since 1984 and, in 2007, was at the highest level recorded in three decades. African American babies are three times as likely to die of causes related to low birth weight than white babies, and they are also twice as likely to succumb to SIDS, or Sudden Infant Death Syndrome.

In The Quiet Politics of Infant Mortality, I argue that contemporary inattention to infant mortality in the U.S. has as much to do with race as the numbers themselves. Unlike the turn of the 19th century, when national biopolitical strategies were aggressively pursued, it was just last year that the first national initiative in almost a century was announced. Interventions such as preconception care feature individual-level solutions, such as reproductive health plans and folic acid, and not community- and structural-level interventions such as poverty reduction. Thus, while it is gratifying to see a hint of federal attention to the problem of infant mortality in the United States, contemporary strategies thus far have failed to address chronic inequality and structural violence while also placing the burden of failure squarely on women’s shoulders.

Monica J. Casper

References

Combs-Orme, T. 1988. Infant mortality: Legacy of success for social work. Social Service Review, 62, 83-102.

Garrett, Eilidh, Chris Galley, Nicola Shelton, and Robert Woods. 2006. Infant Mortality: A Continuing Social Problem. Hampshire: Ashgate.

Ladd-Taylor, Molly. 1994. Mother-Work: Women, Child Welfare, and the State 1890-1930. Univesity of Illinois Press.

Newman, George. 1906. Infant Mortality: A Social Problem. London: Methuen.

The Long War: Continuing Battles Over Equity for Children With Disabilities

The recent debacle in the United States senate over the vote to support the United Nations Bill of Rights for Children [1] brought to mind a theme that I believe has remained constant for many years: children with disabilities continue to be treated as second class citizens in many societies. These children have to fight for what is given without question to other nondisabled children. In some cases, battles are won. In other cases, they are lost. What is true is that it is a series of battles in a long war that never ends. These battles are waged on three fronts. First, they take place in the legislative branch of our government. The debacle noted above is an example of that. Secondly, the battles are joined by parents and advocates of these children. These are usually waged in courts of law as well as the thousands of schools and classrooms where parents interact with teachers and administrators. Third, the battles are waged by teachers and other educators who work with these students.

In the USA, we have specific laws [Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act of 1973] that have been passed by congress to guarantee equity. These laws seek to ‘level the playing field’ by establishing the right to a free and appropriate public education in the least restrictive environment. As a result of the IDEA, schools are required to construct and implement individual education plans (IEP) for each student identified as having a disability. Schools are also required to construct individualized plans under the auspices of the 1973 Rehabilitation Act for children whose disabilities deleteriously impact their performance in school. Sadly, my experience in US schools tells me that for many children these rights continue to be abrogated. I have seen groups of children with disabilities denied lunch with non-disabled children simply because they have the diagnostic label of ‘conduct disordered’. I have seen children expelled from school for behaviors that other non-disabled children exhibit and receive no consequence. I have seen disabled children’s individual education plans ignored. I have seen middle school children go for an entire school year without receiving the special education services to which they are entitled. My students observe the same thing, and ask “how can this be?”, “how can this happen”? My experience in Mexico as a part of my Fulbright work affirms the cross cultural nature of this state of affairs. While there are federal laws in Mexico that guarantee the right to an education for ALL children [2], the sad fact is that for many with the most severe disabilities public education is not an option. It is common knowledge while that may be ‘the law’ it is no guarantee that children with disabilities are served. It is also true in Mexico that while some more noticeable disabilities are addressed in law, the hidden disabilities such as learning disabilities are not recognized.

The stories of parents are particularly compelling. In my work in a non-governmental center for children with severe, profound, and multiple disabilities in Mexico, I am in contact with the parents of these children every day. They will tell you of schools that refuse admittance because there are no programs, no teachers, no space – in short no resources. They will tell you of the battles they fight every day on behalf of their children. They can attest to the exhaustion they feel at the end of every day just to fight for what a non-disabled child gets at no cost. And tomorrow looks to be just the same. For them it is a long war indeed.

In my role as both a teacher and as a teacher-educator, like many other educators in special education I’ve been working to support children with disabilities for many years. I began this work in 1973. Over the ensuing years I’ve held jobs in state institutions, public schools, and private centers that serve these children. I’ve been a consultant to many different school districts, I’ve worked in American schools in Germany and currently am working as a Fulbright scholar in Mexico. I am also a professor at Pacific Lutheran University in Tacoma Washington and my work there focuses on training future teachers to work effectively with children with different types of disabilities. When I discuss the rights to which these children are entitled with my students (the right to a free and appropriate public education, the right to due process to name two of them) I note that while in many countries we’ve come a long way in ensuring those rights, we are still engaged in battles to guarantee those rights are not abrogated. In other countries, the right to a free and appropriate education may be ‘the law’ but it is not the reality. All of us as teachers are continually fighting for the rights to which our students are entitled – it comes with the territory of being a special education teacher.

The costs to our children are enormous. I’ve had more conversations than I care to recount with children whose self-image has been battered by years of “you’re different”’, “you’re not good enough”’, “you’re a failure”. I’ve taught these children in deplorable places and conditions. I remember my first classroom in 1973 was a glorified closet in a public school that had been closed. While other, ‘normal’ children were taught in a newly constructed school, students in my program (a program for children with autism) were relegated to an abandoned school building. Lest you think this is ‘ancient history’, I can take you today to a K-12 program in a US school district that serves children with behavior and emotional disabilities that is housed in – you guessed it – a school that has been shuttered because it is deemed to be an inadequate facility. While in this building, these children have no access to ‘normal peers’. They have no opportunities to see, talk to, nor play with their non-disabled peers. They take special transportation to school. The message they get is “you’re different”, “you’re not good enough”. They define themselves in those terms and it becomes a self-fulfilling prophecy for them. It is a cycle from which they cannot escape. The long term effects of this are profound.

From an economic perspective, the cost to our societies is a critical factor. It is an accepted fact in public health circles that preventative efforts are much more economical than intervention at the tertiary level. It takes a fraction of the cost to intervene early. That is why we have programs to inoculate children from many diseases. That is why we have routine screenings for vision and hearing. In many school districts early identification and service delivery for children with ‘hidden’ disabilities such as specific learning disabilities or emotional/behavioral disabilities does not occur. We wait for children to become greatly discrepant from their peers before intervening. We intervene many times – if at all in some cases – very late and thus increase the cost and decrease the chances of minimizing the disability. Many educators see this, and certainly many parents see and feel it as well.

For children with disabilities and their families it is indeed a long war. A battle to ensure physical therapy services that is won today will be replaced by another battle over another service tomorrow. The continual battle to equip teachers with skills to effectively work with children who are ‘different’ will be replaced by the battle over the development of skills and knowledge that school leaders must have to create communities of learning where every child is supported and valued. And while these battles continue, those that suffer the most are these children and their families.

No matter what country you’re in, where you are raised, where you live or work, this theme plays out. I see it in the USA and I see it in Mexico. It is no doubt true in other countries as well. This war will continue. Ensuring equity and fairness for all our children is a goal worth going into battle for. We will never achieve these things without demanding them and battling for them. To quote Peter McLaren, the noted critical theorist, “Teachers and students need to realize that justice does not already exist because laws exist. Justice needs to be continually created, constantly struggled for” [3].

Gregory J. Williams

Notes

1. The New York Times, December 4, 2012 -: "Dole Appears, but G.O.P. Rejects a Disabilities Treaty".

2. Santibañez, L., Vernez G., P Razquin, (2005) Education in Mexico: Challenges and Opportunities, RAND Corporation.

3. McLaren, Peter. Life in schools: an introduction to critical pedagogy in the foundations of education. 2nd ed. New York: Longman, 1994.

Oportunidades: Co-responsibility and the Politics of Health Care in Mexico

Public health mural, 2009.  Photo by Veronica Miranda.

On September 3, 2012, outgoing president Felipe Calderon made his sixth and last televised State of the Nation address. He reiterated that every low-income woman in Mexico would have access to free prenatal care and delivery. This monumental change in the national public health system came in response to Mexico’s pledge to achieve the United Nations’ Millennium Goal Five that aims to significantly improve maternal health by the year 2015. The goal encompasses two primary objectives: 1) reduce maternal deaths by 75 percent; and 2) provide universal access to reproductive health including prenatal care (MacArthur Foundation 2008). Implementation of the policy has taken place through the adoption of the poverty alleviation program Oportunidades; founded in 2002 and based off its predecessor, the social program known as Progresa. 

It is critically imperative to assess and analyze Oportunidades, especially since it is currently supported by powerful financial institutions such as the World Bank and the Inter-American Development Bank.  Both of these influential institutions promote the progam as a model for global social and economic development. Oportunidades is based on the assumption that maternal health disparities can be overcome by providing biomedical services to marginal populations through the distribution of performance-based cash incentives (Levy 2006). According to Calderon, it has become the most important federal program to fight poverty and social inequality. By the end of his presidential term, more than 6 million families, one in four Mexicans, have benefited from the program. The universal health program Seguro Popular works in conjunction with Oportunidades to provide poor women with state health insurance that grants them free hospital births.

Oportunidades provides small financial stipends along with education and access to health care for Mexico’s most vulnerable populations: children under five and pregnant and nursing mothers. It is a program that attempts to solve poverty through a complementary approach that focuses on nutrition, education, and health. An important component of the program is the belief that individuals have a responsibility for their own livelihood and economic future. Unlike poverty alleviation programs in past decades, this program breaks away from a practice of providing food subsidies or actual food staples, such as tortillas and milk. Instead, participants are given cash transfers so that they can freely participant in the market economy, therefore providing them with more decision-making freedom. As Santiago Levy (the program’s co-creator) boldly states, Oportunidades “seeks to break the vicious cycle of poverty in all extremely poor households, rural and urban, in Mexico” (2006:21). The rhetoric behind this program pushes for three primary principles: participation, empowerment, and co-responsibility (here is a short video about the program from PBS).

Since 2002, I have completed my undergraduate training, master thesis research, and initiated doctoral fieldwork in two sister pueblos (Saban and Huay Max) located in southwestern Quintana Roo, Mexico. The research community is rural and located away from major highways, which inevitably means that vital economic, political, and social resources are limited. The community sits in the heart of the Caste War region where 150 years ago Yucatec Maya revolted against the Mexican government and local ruling elite. This history is remembered not only through visual markers on the landscape but also by the political and economic repercussions of the war that left the region underdeveloped, disconnected, and impoverished. This is an indigenous community where Spanish and Yucatec Maya are spoken. Saban is the larger pueblo (pop. approx. 2,000) and has 500 women of reproductive age (INEGI 2005). All major state and community resources are located in Saban (state clinic, police station, higher educational institutions, and la casa ejidal—meeting place for communal land owners). Huay Max has just over a 1,000 inhabitants, 250 of which are women of reproductive age (INEGI 2005). The pueblos are connected through marriage, shared farmlands, state resources, and a socio-political organization that is dominated by Saban. Main sources of economic subsistence are agriculture and male migration to tourist zones along the coast (such as Cancun and Playa del Carmen). Few economic opportunities exist for women; yet, some raise money by selling livestock, weaving hammocks, and embroidering clothing.

Women in the community spend most of their time in their domestic sphere, the solar (housing complex). The government clinic is one of the few places that women gather outside of the home. It is also the main place were women interact with members of the government and participate in what Joseph and Nugent (1994) referred to as “everyday forms of state formation”. The clinic is located in Saban and has been there for more than thirty years. It is a first tier health facility that provides primary care and is the only health center in the immediate region. The closest second tier facility is located an hour’s drive away and the closest tertiary care is in the capital city of Chetumal, 3½ hours away. Depending on the state health administration’s budget and availability, the clinic is sometimes appointed a full-time resident doctor and a senior physician. The clinic also employs 2-3 full time bilingual (Spanish/Yucatec Maya) nurses.

The federal program Oportunidades is managed and distributed through the clinic. It has two primary goals: 1) to reduce maternal and infant mortality through preventative care and education and 2) to support continuous education among school age children. My research focuses exclusively on the first category. The majority of pregnant women in the research site participate in Oportunidades. Participants are awarded 400 pesos (approximately $34 US) every two months on the condition that they meet certain demands such as attending monthly education meetings and prenatal appointments at the clinic. As a result of limited economic opportunities, most women depend on this cash stipend as their primary source of income. Women also participate in the federal health insurance program Seguro Popular, yet their involvement is minimal. Women only use Seguro Popular when/if they seek care at the regional hospital.

Although the majority of women use the resources provided by the clinic, most seek additional care from local midwives and prefer midwifery during childbirth. Three midwives work in the research site: two in Huay Max and one in Saban. All three are from the community and speak Spanish and Maya. They are empirically trained but have also attended various health education and capacitating programs provided by the Mexican government. Unlike the clinic physicians, midwives live and work in the community and they practice out of their homes unless they are attending a birth. Women in the community view midwifery and state biomedical care as two separate health systems that offer specific resources that at times can be combined to create approaches to pregnancy and childbirth that are specifically tailored to each woman.

One of the main tenets of Oportunidades is an agreement to accept “co-responsibility” for the health and education of the participant’s children, both born and unborn. Co-responsibility begins with the state’s fulfillment of its part of the agreement by educating and providing health care to all participating mothers, as well as giving them a financial incentive for their cooperation. The other half of the agreement states that women are responsible for adequately feeding and clothing their children, making sure that they continue to attend school, and that they receive suitable nutrition and healthcare. Pregnant women are told that their responsibility as mothers and care providers for their children begins with the baby in utero, which is why they are required to attend monthly prenatal checkups. Failure to comply with any of the co-responsibility stipulation, results in immediate elimination from the program and therefore no cash stipend. The local government clinic physician and school administrators are in charge of evaluating if participants are fulfilling all program requirements.

The majority of the women I interviewed said that although they were grateful for the financial stipend they receive every two months, they found the program requirements to be inflexible and sometimes unrealistic. Many women said that occasionally they had a difficult time attending all of their educational talks and/or prenatal checkups as a result of familial obligations or unexpected circumstances. These situations varied; from a child being sick, to a commitment to help another family member or friend, or the fact that the person was just not feeling well. Many women commented that, in the end the cash transfer did not really equal the amount of time they spent fulfilling their agreed responsibilities. In some case, women’s workload was significantly extended as a result of their need to fulfill all of their Oportunidades requirements. The unintended burden that conditional cash transfer program implementations have on female participants has also been documented by researchers working in Nicaragua (Bradshaw and Quiros Viquez 2009). Regardless of their many complaints and critiques of the program, all the women I spoke with in Saban and Huay Max adamantly stated that they valued and in many cases depended on the resources that they received from Oportunidades and did not want the program to go away. Instead, what they wanted was more involvement in program development and implementation.

An additional critical analysis of Oportunidades demonstrates the Mexican state’s attempt to place the responsibility for the care of its young citizens onto their mothers. Through Oportunidades, women are given everything that they need to support the education, health, and nutrition of their children. Therefore, the program absolves the state of any responsibility for the welfare of poor Mexican children. Oportunidades is similar to other state poverty alleviation campaigns that have historically taken place throughout the world which focus on the responsibilities of motherhood and “good citizenship” (Davin 1997). England instituted a similar national program during the early twentieth century that stated, “the infant cannot indeed be saved by the state. It can only be saved by the mother. But the mother can be helped and can be taught by the state” (Davin 1997:125). This case is a clear example of how classical ideology about the designated responsibilities of the state and its citizens continues to affect current social programs.

Oportunidades is revered both nationally and internationally as a success and a model poverty alleviation program. These evaluators support the Mexican government’s emphasis on including the extremely poor in programs that ultimately lead to their transition out of poverty. In Oportunidades, the poor are required to participate in specifically designated practices that are intended to increase their “human capital”; these include the attainment of continuous education, the regular attendance of health checkups, and the eating of nutritional foods. Mexico is framing Oportunidades, a conditional cash transfer program, as an agreement of “co-responsibility”. This co-responsibility is two sided. The Mexican state will help its extremely poor citizens by giving them financial cash stipends as well as providing them with the education and good health that they need to succeed. According to the state, by removing these social and economic barriers poor individuals no longer have damaging obstacles set in front of them that would limit their potential.

Yet, it is important to remember that Oportunidades is a conditional program. Participants are required to follow all requirements or face immediate removal of the program. In the end, the discourse of co-responsibility absolves the state of its obligation to its citizens by placing all social and economic welfare on individuals. As Molyneux (2006) explains, Oportunidades’ practices of monitoring, coercion, and surveillance benefit the larger political and economic goals of the state government and not the participants. The program negates to address critical infrastructural and social barriers that directly contribute to the overall health and reduction of poverty for women and children. These include better roads, clean water, enhanced literacy for women, and much needed medical resources for rural clinics and hospitals. The last two are crucial points, especially since the program attempts to move participants away from traditional forms of health into a formal biomedical health care system. Yet, the clinic in Saban, along with the two nearest public hospitals, currently lack the medical technology and staff to meet the needs of all the women and children in the area.

Ultimately, supporters of programs like Oportunidades argue that poor and unhealthy people are to blame for their own circumstances, since the government has provided all the resources needed to ensure a good quality of life (e.g. education, health care, and financial assistance). This discourse about personal responsibility is nothing new, and has been discussed extensively in much of the anthropological and development literature.

But an interesting and important phenomenon that I am seeing in my current research is how rural indigenous women are using Oportunidades’ discourse of co-responsibility to make claims on the state. According to the women in the community, if they comply with all of the requirements of the program then the state must be responsible to fulfill its obligations as well. This was evident in the women's resistance to a community clinic physician who they felt refused to respect their cultural traditions and approaches to birth. When these women complained to government officials about the local physician, they specifically focused on the fact that this physician had mismanaged her position as a regulator and assessor of Oportunidades.

The tenuous relationship between the physician and many of the women in the community climaxed when the physician penalized all the of the 300 plus women from Saban who were participating in Oportunidades by officially stating that the they did not comply with the program requirements for that payment cycle and therefore they should not receive their cash stipend. According to the women this was not true--they argued that they had met all of their obligations and it was the physician, not them, who failed to follow the contractual rules of the program. In response, the women organized together and protested their grievances to state health policy officials and demanded that the government replace the physician with someone who would was more willing to work with the community while also fairly managing his/her responsibilities within the program of Oportunidades. The key part of this issue is that the women in the community are not making arguments against biomedicine or even the Mexican state; instead, they are demanding better oversight from the government, and accountability from local physicians. Ultimately, these women are also standing up to doctors and the government in an attempt to make them understand that their continued use of midwifery is a response to the practical, economic, and political limitations of state health care systems in rural Quintana Roo. In many respects, midwifery is a safety net that many women rely on when the Mexican government is unable or unwilling to hold up its end of the health care bargain.

Veronica Miranda
PhD Candidate
Department of Anthropology
University of Kentucky

References

Bradshaw, Sarah and Ana Quiros Viquez. 2009. Even if conditionalities work, do women pay the price. Poverty Insights 80: 6.

Davin, Anna. 1997. Imperialism and Motherhood. In Tensions of Empire: Colonial Cultures in a Bourgeois World, Fredrick Cooper and Ann Laura Stoler, eds. Berkeley: University of California Press. (87-151).

Joseph, Gilbert M. and Daniel Nugent, eds. 1994. Everyday Forms of State Formation: Revolution and The Negotiation of Rule in Modern Mexico. Durham: Duke University Press.

Levy, Santiago. 2006. Progress against Poverty: Sustaining Mexico’s PROGRESA-Oportunidades Program. Washington DC: Brookings.

MacArthur Foundation. 2008. Mexico Offers Free Prenatal Care to Poor Women. Published May 27, 2008. http://www.macfound.org/site/apps/nlnet/content2.aspx?c=lkLXJ8MQKrH&b=1479547&ct=2051861. Accessed November 28, 2010.

Molyneux, Maxine. 2006. Mothers at the Service of the New Poverty Agenda: Progresa/Oportunidades, Mexico’s Conditional Transfer Programme. Social Policy and Administration 40(4): 425-449.

Substance Abuse Treatment: Maintaining the Status Quo?

My dissertation research will focus on following women who misuse prescription drugs as they undergo substance abuse treatment in rural Central Appalachia. I have certainly found that lack of access to treatment is an issue in my preliminary research, but the substance abuse treatment system itself also proves problematic. Through the literature on substance abuse treatment and my own fieldwork in Central Appalachia, I suggest that substance abuse treatment programs, especially those for women, help maintain the status quo both outside of and within the programs themselves through specific characterizations of treatment program clients as individuals who are personally responsible for their addiction. I look forward to further parsing out the relationship between substance abuse treatment and social control mechanisms in my dissertation research.

Radcliffe and Stevens (2008:1006) argue that the institution of substance abuse treatment is rooted in the neoliberal ideals of personal responsibility because “The notion of addiction is only meaningful in a culture where the self-control of individuals is valued above all.” Erica Prussing (2007) claims that treatment in the United States in particular is based on an Anglo-American middle-class Protestant culture that emphasizes self-control, individualism, and personal testimony. Treatment programs are focused on remaking the individual from someone who exposes their body to drugs to an individual who is controlled, responsible, and who has a “universal body…living in a uniform but nontoxic environment” (Hunt and Barker 1999:128). 

Treatment programs aim to make individuals into so-called “normal” rather than “pathological” citizens and through this transformation divorce clients from their environments and the marginalized statuses they may have based on class, race, gender, and drug use (Hunt and Barker 1999; Skoll 1992; Zigon 2010). For example, people who I interviewed who have been through treatment programs for prescription drug misuse in Central Appalachia complain that the treatment program staff expect their clients to instantaneously turn into middle-class citizens and ignore the barriers clients face in trying to undergo this metamorphosis, from living in an area that has few job opportunities that pay a living wage to being stigmatized as a drug felon and essentially barred from employment.

I am particularly interested in how treatment programs characterize women who use drugs. Although I could not find any recent literature that explores how women are framed in treatment programs, anthropologists and feminists argue that women who use drugs are more stigmatized by the public, media, and policy makers than men who use drugs in the US (see Bourgois and Schonberg 2009; Reagan 2010; Roberts 1997). Casting women who use drugs as “bad” is tied to the perceived relationship between women, particularly mothers, and children (Flavin and Paltrow 2010; Goodwin 2011; Whiteford and Vitucci 1997). The relationship between fathers and their children is generally not emphasized. For example, most women who enter emergency departments because of drug-related issues are asked about their children and whether or not they are pregnant, while men are not questioned about their children (Chavkin and Breitbart 1997). 

In my own experience, I am continuously surprised when I tell someone about my proposed dissertation work and they exclaim, “Oh, the poor children!” I am left shocked as I wonder how I can frame my research as focusing on women’s health and their access to health care, not how women’s health affects their children. Ortiz and Briggs (2003) and Springer (2010) argue that characterizing women who use drugs as “bad” fits perfectly into neoliberalism, where personal responsibility and individual moral failure are highlighted in order to relieve society of accountability for poverty, inequality, racism, and other social ills. In a neoliberal system, women’s drug use is framed as making them not only “bad” women and mothers, but also “bad” citizens who make selfish choices that hurt the health of the society at large by supposedly harming children’s health (Craven 2005; Goodwin 2011; Whiteford and Vitucci 1997).

Skoll (1992) argues that treatment programs’ individualized goals emphasizing personal responsibility and self-control prevent group solidarity, neglect radical discourses associated with rights movements, and thereby prevent treatment programs from challenging the status quo of a society that marginalizes segments of the population. Programs that focus on remaking the individual may not address women’s most basic concerns, do not change the environment in which women must live, and ignore the association of drug use with the feminization of poverty and homelessness (Chavkin and Breitbart 1997; Sun 2007; Zigon 2010). For instance, women were frustrated with a prison-based substance abuse treatment program because it did not address their need to find employment after imprisonment (Hall et al. 2001). Time that women were forced to spend in drug treatment actually impeded them from spending time in vocational training programs because treatment and vocational programs were scheduled concurrently (Hall et al. 2001). 

Differentiating between “good” and “bad” women and mothers allows treatment programs and society more generally to blame societal problems on the most marginalized women who are often impoverished, unemployed, facing violence, and dealing with poor health (Bourgois and Schonberg 2009; Goodwin 2011; Ortiz and Brigss 2003; Springer 2010). The media and policy makers blame drug-using women for giving birth to “damaged” babies, for overburdening the foster system, and for challenging traditional family structures as children are removed from homes (Ortiz and Briggs 2003; Springer 2010). Hall et al. (2001) and Radcliffe and Stevens (2008) argue that if treatment programs do not give women who misuse drugs vocational training, help with finding housing, and other social support in overcoming their underclass status, they may more easily fall back into their roles in informal drug economies, drug using networks, and communities where they used.

Women in Central Appalachia who I have spoken with said they are frustrated with substance abuse treatment because although they generally value counseling services at treatment facilities, they feel stuck in their environments. Women said that the treatment programs they have dealt with do not help in the search for jobs that pay a living wage, alternatives to abusive home environments, or legal services for criminal offenses. Women said they feel blamed by treatment staff if they relapse or break program rules. Although I have not interviewed staff in Central Appalachia, treatment program staff who I have spoken with from other US locales said they feel helpless in changing the environments in which their clients live. I in no way want to suggest in this paper that program staff are all powerful beings who can suddenly change their clients’ lives. However, perhaps there are issues that programs could address that would challenge the status quo where women who use drugs are marginalized or would mediate the structural violence that women who I have interviewed in Central Appalachia regularly face. I hope to explore this further in my dissertation research.

Treatment programs that emphasize self-control and personal responsibility may also prevent reforms of the treatment program system itself by labeling all client critiques as “denial” or by silencing clients who relapse. According to the outpatient treatment program for homeless women that Carr (2006) examined, “denial” is a primary component of addiction. Clients are supposedly in “denial” when they do not acknowledge that they have a problem with substance abuse or when they attribute any of their problems to anything other than their substance abuse (Carr 2006). Using this emblem of “denial,” treatment staff characterize all clients’ critiques of the program as the clients’ “denial” of the connection of their substance use with their problems (Carr 2006). Clients therefore have no way of critiquing the treatment program (Carr 2006). Programs that focus on remaking the individual and thus blame the individual for any transgressions may ignore structural properties of programs that impede clients’ success. 

If treatment programs are located in communities where women used to buy drugs, it may be harder for clients to commit to treatment when they can easily find a dealer they know (Hall et al. 2001; Nelson-Zlupko et al. 1996). In my experience interviewing women who have been through treatment, women said they feel blamed and defeated when they relapse or break program rules and therefore do not feel entitled to critique the aspects of the program that did not work for them. The emphasis on personal responsibility seems to be internalized by clients and thus effectively silences client critiques of the programs.

By emphasizing the neoliberal Anglo-American middle-class ideals of self-control, personal responsibility, and individualism (see Radcliffe and Stevens 2008; Prussing 2007), I suggest that substance abuse treatment programs in the US help maintain the status quo of the environment in which drug use takes place and the treatment program itself. I hope to further analyze the process through which treatment programs distort, silence, or even support clients’ critiques of social injustice in my dissertation research. I think this process will play a role in how successful clients understand treatment programs to be.

Lesly-Marie Buer

References

Bourgois, Philippe and Jeff Schonberg. 2009. Righteous dopefiend. Berkeley: University of California Press.

Carr, E. Summerson. 2006. “Secrets keep you sick”: Metalinguistic labor in a drug treatment program for homeless women. Language in Society 35:631-653.

Chavkin, Wendy and Vicki Breitbart. 1997. Substance abuse and maternity: The United States as a case study. Addiction (9):1201-1205.

Craven, Christa. 2005. Claiming respectable American motherhood: Homebirth mothers, medical officials, and the state. Medical Anthropology Quarterly 19(2):194-215.

Flavin, Jeanne and Lynn M. Paltrow. 2010. Punishing pregnant drug-using women: Defying law, medicine, and common sense. Journal of Addictive Diseases 29:231-244.

Goodwin, Michele Bratcher. 2011. Precarious moorings: Tying fetal drug law policy to social profiling. Rutgers Law Journal 42:659-694.

Hall, Elizabeth A., Dana M. Baldwin, and Michael L. Prendergast. 2001. Women on parole: Barriers to success after substance abuse treatment. Human Organization 60(3):225-233.

Hunt, Geoffrey and Judith C. Barker. 1999. Drug treatment in contemporary anthropology and sociology. European Addiction Research 5:126-132.

Nelson-Zlupko, Lani, Martha Morrison Dore, Eda Kauffman, and Karol Kaltenbach. 1996. Women in recovery: Their perceptions of treatment effectiveness. Journal of Substance Abuse Treatment 13(1):51-59.

Ortiz, Ana Teresa and Laura Briggs. 2003. The culture of poverty, crack babies, and welfare cheats: The making of the “Healthy White Baby Crisis.” Social Text 76 21(3):39-57.

Prussing, Erica. 2007. Reconfiguring the empty center: Drinking, sobriety, and identity in Native American women’s narratives. Culture, Medicine, and Psychiatry 31:499-526.

Radcliffe, Polly and Alex Stevens. 2008. Are drug treatment services only for “Thieving Junkie Scumbags”? Drug users and the management of stigmatized identities. Social Science and Medicine 67:1065-1073.

Reagan, Leslie J. 2010. Dangerous pregnancies: Mothers, disabilities, and abortion in modern America. Berkeley: University of California Press.

Roberts, Dorothy. 1997. Killing the Black body: Race, reproduction, and the meaning of liberty. New York: Pantheon Books.

Skoll, Geoffrey R. 1992. Walk the walk and talk the talk: An ethnography of a drug abuse treatment facility. Philadelphia: Temple University Press.

Springer, Kristen W. 2010. The race and class privilege of motherhood: The New York Times presentations of pregnant drug-using women. Sociological Forum 25(3):476-499.

Sun, An-Pyng. 2007. Relapse among substance-abusing women: Components and processes. Substance Use and Misuse 42:1-21.

Whiteford, Linda M. and Judi Vitucci. 1997. Pregnancy and addiction: Translating research into practice. Social Science and Medicine 44(9):1371-1380.

Zigon, Jarrett. 2010. “A disease of frozen feelings”: Ethically working on emotional worlds in a Russian Orthodox church drug rehabilitation program. Medical Anthropology Quarterly: 24(3):326-343.

The Commodification of Celebrity Health

On January 17, 2012, celebrity chef Paula Deen went on the Today Show to clear up rumors about her health and publically announce that she had been diagnosed with Type II diabetes in 2009. In the days that followed, Deen did not receive the support and encouragement she had hoped from colleagues and fans. Instead, she was met with tremendous backlash from the American public who questioned her motives for hiding her illness for so long. Many accused the “Butter Queen” of being a hypocrite for continuing to glamorize an unhealthy eating lifestyle (deep fried-cheesecake anyone?) while knowing full well its detrimental health effects. Adding insult to injury, Deen also announced her multi-million dollar contract to become the spokesperson for Novo Nordisk Pharmaceuticals’ diabetes drug, Victoza, leading people to wonder if she was using her celebrity status to somehow exploit her illness. While this story has the elements of the usual celebrity scandal (rumor, deceit, money, etc.), what sets it apart is the subject matter. After all, we aren’t talking about an extramarital affair or insider trading – we are talking about the personal process of managing an illness. So why are countless fans, fellow chefs, diabetics, doctors and the media so invested in Paula Deen’s health?

One reason is that Deen’s celebrity status may have a substantial impact on the social image of diabetes as an illness and the reification of prescription drugs as an effective treatment. Medicalization scholars argue that actors, athletes and other public figures are expected to reflect cultural ideals of body image and health. Their wealth and status afford them access to the best medical expertise and care and as a result, consumers place particular value on their healthcare decisions. In a consumer-driven economy, it is not surprising that pharmaceutical companies invest in the reputation of these celebrities to promote their products to potential consumers. Following the theme of this issue, I want to reflect on this strategy which I am calling the "commodification of celebrity health." That is, how the (perceived) health, medical expertise, and treatment decisions of a celebrity can become a commodity which embodies larger social relationships between the public, healthcare providers, and the pharmaceutical industry.

The commodification of celebrity health has both positive and negative implications. One the one hand, actors such as Christopher Reeves and Michael J. Fox have been able to leverage their fame in order to raise public awareness and funds for medical research on their conditions. By openly discussing their private medical issues with the public, celebrities have also been able to address the misconceptions and stigmas attached to certain illnesses. One of the most famous examples of this is Bob Dole’s endorsement of Viagra, a drug manufactured by Pfizer to treat the symptoms of erectile dysfunction. In the 1998 television commercial, Dole admitted that he suffered from the condition and encouraged viewers to work up the “courage” to ask their doctors about the drug. Mamo and Fishman (2001) argue that as a political figure, Dole represented a hegemonic ideal of masculinity, and as a result was able to not only de-stigmatize erectile dysfunction, but legitimize it as a biomedical condition which should be treated with a prescription drug.

Once a celebrity has signed on to endorse a product, their reputation and credibility is, to a degree, tied to that product. This is especially true in the case of pharmaceutical endorsements because of the implications drug failures can be costly. For example, in 2004, Merck Pharmaceuticals withdrew their arthritis drug, Vioxx from the worldwide market after receiving information from the FDA that it significantly increased the risk of heart attack and stroke among users. While Merck quickly initiated a damage control campaign for their company, celebrity athletes Bruce Jenner and Dorothy Hamill found themselves under public scrutiny for promoting the unsafe medication. Jenner explained to ESPN that “Dorothy (Hamill) is not a scientist and I’m not a scientist… we had no idea what was happening behind the scenes. They never told us.” Instances such as this calls to question the ethics of allowing celebrities to offer health advice to viewers, especially when they do not know or understand the risks associated with the products they endorse.

The misrepresentation of medical expertise in pharmaceutical advertisements was also a concern in 2008 when a congressional committee was created to investigate the questionable tactics used by Pfizer Pharmaceuticals in the campaign for their cholesterol drug, Lipator. Celebrity scientist and creator of the Jarvik artificial heart, Dr. Robert Jarvik appeared in a series of Lipator advertisements where he offered medical knowledge and advice on the heart health. However, Jarvik is not a cardiologist nor does he have a license to practice medicine. Futhermore, it was discovered that a stunt double was used in commercials featuring the scientist performing impressive athletic activities. These tactics demonstrate how misleading pharmaceutical advertisements are in presenting the expertise and health of their celebrity affiliates in order to fill prescriptions.

The presentation of medical expertise is particularly relevant in Paula Deen’s case. In her Today Show interview, she admitted that she was not familiar with the illness and didn’t want to tell her fans without being able to offer some sort of program to that could help others who suffered from diabetes. However, the website for her new campaign Diabetes in a New Light is a far cry from the expert medical resource she claimed it would be. The homepage features a contest for members (yes, you have to pay) where you can win a chance to meet Deen in her hometown of Savannah, Georgia. You will also get full access to her new recipe book “Delicious Living Y’all”; cooking tips from her family members; and ideas on how to work with your doctor to develop a treatment plan that works for you. Most importantly, it features a link to her primary sponsor, Norvo Nordisk Pharmaceuticals. Although the site does include some rudimentary suggestions on eating healthy and being active, it prominently features Victoza as a necessary part of a successful diabetes management plan.

When it comes down to it, critics of Paula Deen feel as though she is setting a poor and even dangerous example to other diabetics of how they should be managing their illness. Donna Shaft, a marketing consultant who also suffers from Type II diabetes explains to Fox News that “We of course don't know the terms of her contract with the drug company, but it seems either stupid or hypocritical of them to be endorsing the eating lifestyle she advocates. For her to publicly facilitate the illusion that a T2 [medication] can consume the quantities of fats and carbs and sugars she showcases, even occasionally, is nothing short of a dangerous abuse of the trust many in her audience place in her as an influential public figure.”

While the degree to which Deen actually influences other diabetics is yet to be determined, her celebrity status has made her an asset to Novo Nordisk and in turn helped her brand her Diabetes in a particular way. Specifically, that she has pulled together all of her star power to bring you a fool-proof program to live a “diabetes friendly” lifestyle – all you need to do is purchase her recipes and ask your doctor for Victoza.

As easy as it is to vilify Deen as an irresponsible role model for diabetes management, the value and commodification of her health decisions is the result of a larger shift towards this consumer-driven economy of health. And although she is not the first celebrity to come under scrutiny for her affiliation with the pharmaceutical industry, it is safe to say she won’t be the last.

Tazin Karim

References

Mamo, Laura and Jennifer Fishman. 2007. Potency in All the Right Places: Viagra as a Technology of the Gendered Body. Body & Society, December, Issue 7: 13-35.