Chapter One
Introduction
She was seventeen, two months pregnant, and he was nineteen when the police battered down the door of her apartment to arrest him. They were both from loving families, who worked hard, attended church, and were well known in the community. Syracuse at the end of the 1990s had the twin tragedies of a collapsed legitimate economy combined with swelling illicit drug markets, in which her boyfriend became entangled. She was attracted to his âthugâ swagger, sporting diamonds and the confidence that cash can provide. But he was also smart and caring, values that she knew her family would appreciate. She had become pregnant after his first arrest, in her adolescent denial not believing that either pregnancy or prison was a real possibility. When she told them about her pregnancy, her parents said they would support whatever decision she would make, but in their clear-eyed assessment of the difficulties ahead of her, they offered to pay for an abortion. Her babyâs father, via a collect call from the county jail, begged her, âPlease donât terminate my baby.â She continued with her pregnancy, beginning with making an appointment for prenatal care. For a seventeen-year old she was remarkably capable, working part time while attending high school and visiting her boyfriend, first in the county jail and then the state correctional facility, every week. Her mother attended the birth of her child, while her babyâs father listened over the phone from prison, where he remains today. Her baby was full term and healthy. Her babyâs father never had his name entered on the birth certificate, because, being unmarried, to enter his name would require his notarized signature or his presence. Neither he nor his family has provided any financial help to her, but she has accepted an average of $200 in collect phone calls from him each month of his incarceration. She feels that the love and support he has given her in those telephone calls, and the frequent visits she makes with her child to him in prison, have kept him involved as a father to her child for the past seven years.1
The case study, above, is the story of an African American woman in Syracuse, New York. The woman, who I will call Mae and who is remarkably resourceful and intelligent, currently works, attends college part time, and supports her child single-handedly. Maeâs success in mothering her sonâdespite poverty and an incarcerated partnerâis evidenced by his health, early reading ability, wide vocabulary, and self-confidence. Many of the young single mothers I have metâlike Maeâstruggle heroically to provide for their childrenâs emotional, social, and financial needs. Despite the mothersâ efforts, high infant death, violent neighborhoods, dilapidated rental housing, failing schools, and missing fathers are often insurmountable obstacles.
Syracuse, in central New York State, has been characterized as a âtypical ⊠American mid-sized city,â and is routinely used as a test market for consumer goods.2 Casual visitors often remark on the lush green summer foliage, the parks, the beautifully preserved nineteenth-century architecture, and even the quality of our restaurants. Hidden from view, invisible even to many long-term residents, is the poverty and unequal mortality of people of color. Syracuse has spiraled downward economically in recent decades, with the loss of industry and concomitant loss of jobs. These fiscal problems have hit worst the communities of color, which make up about one third of the city.3 African Americans and Latinos have been pushed out of their former homes due to urban renewal, into decaying neighborhoods without grocery markets, with the highest lead poisoning in the city, and that are served by inadequate schools.4 Many residents of these impoverished parts of the city see their only economic hope in the state-run lottery, on which they spend an inordinate part of their meager earnings.5 Some younger males find employment in the illicit drug markets, which draw customers from all parts of the city and the suburbs. Less than one third of students get their high school diploma in June after four years of education; some graduate high school later, some earn a GED, and some never finish.6
Following urban renewal and increasing unemployment, in 1973 New York State implemented the âRockefeller Drug Laws,â mandating lengthy prison sentences for possession or sale of illicit substances.7 Incarceration rates among African Americans have tripled since that time and female-headed households have doubled.8 Young males of color began experiencing arrest and jail time as a rite of passage to adulthood. Todayâs incarcerated adolescent males are the second, and in some families the third, generation of children who were brought to the correctional facility on visiting day to meet their fathers.
Rather than being deviant, incarceration of males of color between age sixteen and thirty has become normal. As a result, people of color are facing the âprisonizationâ of their communities.9 Prison fashion can be seen among young males, who favor clothing several sizes too large. Young women say that they are attracted to the âthugâ look in males and especially the âbuffedâ bodies of the newly released.10 Large numbers of the community cannot vote, due to the felony disenfranchisement penalty.11 Women are often the main breadwinners, because males have not gained marketable job skills in jail. Disproportionate incarceration may also be the key risk factor in the alarming rise of HIV and hepatitis B and C among African American women and Latinas; all of the behavioral risks for transmission of these blood- and semen-born infections occur in prisons and jails, where the usual public health protections are illegal and where the rate of infection among inmates reaches between five and ten times that in the community.12
African American and Latino babies die two and one half times as often as white babies in Syracuse.13 Infant mortality is too often addressed as if it were an isolated problem, rather than part of a repeating pattern of higher mortality throughout the life span, inadequate education, disproportionate incarceration, substandard housing, and unemployment. The stories and the data in this book center on Syracuse, New York, from 1997 to 2003 and show that low birth weight, premature birth, and infant death are a part of life patterns resulting from systemic discrimination in all of our social institutions. This unequal treatment increases the accumulation of risk over a lifetime and, in some cases, is passed on to the next generation.14
In an analysis by the Commonwealth Fund, comparing the 2002 infant mortality rates (IMR) of twenty-three developed nations, the United States ranked last.15 Compared with Icelandâs IMR of 2.2 infant deaths per 1,000 live births, the lowest of the twenty-three countries, the United Statesâs rate was 7.0. The study showed considerable variation among states in the United States, which ranged from 5.3 to 9.1. By 2004, the U.S. rate had inched down to 6.78 per 1,000 live births, with New York Stateâs rate nearly matching that in Texas, Kentucky, and Arizona.16 UNICEF, which in 2007 ranked the United States next to last among twenty-two ârich countriesâ in measures of child well-being, said, âSignificant in itself, the infant mortality rate can also be interpreted as a measure of how well each country lives up to the ideal of protecting every pregnancy, including pregnancies in its marginalized populations.â17 Social scientists and international health specialists use the infant mortality rate of a region either alone or grouped with other measures to evaluate the socioeconomic development, as well as the degree of social inequality, in that region. By this measure, Syracuse, New York, faces serious problems, which it shares with many other United States cities.
The conceptual framework for this work is structural violence, a theory elaborated by Galtung18 and further defined by Weigert,19 as âpreventable harm or damage ⊠where there is no actor committing the violence or where it is not meaningful to search for the actor(s); such violence emerges from the unequal distribution of power and resources or, in other words, is said to be built into the structure(s).â Structural violence encompasses institutional racism, relative deprivation in food or health care, disease-ridden environments, and stigmatizing social norms. The âsearch for actorsâ to blame obscures the preventable harm in macro-level elementsâbureaucracies, institutions, environments, policiesâthat form the context in which disproportionate illness and death occur. Steven Steinberg argues that racism is âimbedded in major institutionsâ and that âliberalâ analysts have ignored the racism that is built into the social fabric of society.20 As children on the schoolyard we often chanted, âSticks and stones can break my bones, but words can never hurt me,â when a classmate would shout insults. Too often racism, if considered at all, is conceived of as overt behavior of one individual toward another, typically in the form of insulting language. Structural violence in Syracuseâmore sticks and stones than wordsâis a form of racism that is less visible, but more pernicious than overt verbal insults. Census data indicate profound economic and educational disparity among people of color in Syracuse; criminal justice data indicate that African Americans and Latinos are many times more likely to be incarcerated than their white neighbors. This inequality forms the context of higher African American and Latino infant death and poorer health for many of the survivors.
Who Gets Sick? Who Dies?
As one of his top five priorities, former Surgeon General Dr. David Satcher called for research and intervention to eliminate disparities in health and survival related to race and minority status. In response to Dr. Satcherâs call, a landmark study by the Institute of Medicine, Unequal Treatment, documented in a wealth of detail how people of color are treated differently by physicians, clinics, and hospitals in ways that are detrimental to their health.21 Among the physicians, nurses, and other health professionals with whom I work in Syracuse, this study is receiving serious consideration, as it should. Access to and receipt of quality healthcare are critically important. But health is a bigger issue than healthcare. While access to good quality healthcare cannot be overestimated, healthcare alone cannot make up for disease-inducing environments. Syracuse, a city of fewer than 150,000 residents, has five hospitals providing world-class medical care. Three of these hospitals offer labor and delivery services, and two of them feature neonatal intensive care units. Yet, within two miles of these sophisticated medical facilities sit neighborhoods with among the highest rates of infant death in the United States. Clearly, we need to look beyond the clinic and hospital, to the neighborhoods, schools, correctional facilities, and policies that create the context in which lives are lived. It is this crucible of disadvantage and discrimination that makes people of color sick. The stories and statistics in this book focus on the neighborhood and environmental risks that lead to disproportionate infant death among the impoverished residents of Syracuse. I do not address the many healthcare and clinical interventionsâfrom prenatal care to testing for gestational diabetesâthat also help women to deliver healthy babies. A plethora of books and articles cover prenatal and obstetrical care and few scholars doubt its value.22 Very few published works describe the impact of ecological and social disadvantage on infant death. This book fills that gap.
Although this policy focus on health disparities only began at the turn of the millennium, unequal health of the poor, and most profoundly people of color, has been recognized at least since public healthâs beginning in the nineteenth century. I became aware of the issue in 1972, as a first-year nurse on the pediatric ward at Boston City Hospital. There, I cared for children whose reoccurring admissions for lead poisoning resulted from their repeatedly being returned to the same apartments where lead-based paint crumbled into powder around doors and windowsills. Children were admitted with multiple fractures from being hit by cars while playing on city streets and others were nearly killed by gunshots. Two Puerto Rican sistersâages three and fiveâcould not escape the blaze in the tenement that was their home because the fire escape door had been nailed shut, blocking their escape from the burning building. Third degree burnsâcovering the faces, hands, and nearly three quarters of the skin on their bodiesâhealed into thick bands of scar that contrasted shockingly with the colorful ribbons tied in their tightly curled pigtails.
Most of the school-age children were barely literate, stumbling over simple words in the books we encouraged them to read. The Puerto Rican children were also unable to read the Spanish-language comic books we obtained for them, thinking that perhaps they were better educated in their native language. In an effort to coax their mastery of arithmetic, I taught the children blackjack during slow periods on the ward. It was during that year that I realized that medicine, surgery, and advanced technology were often missing the point, coming too late, and patching up children damaged by their environments, only to send them back to those environments. I had grown up in what at that time was an all-white, largely working class suburb of Boston, which was both fewer than ten miles and a whole world away from the Roxbury, Mission Hill, Dorchester, and South Boston neighborhoods served by Boston City Hospital in that era.
Leaving Boston for California, I returned to school, earning a doctorate in medical anthropology and an MPH in epidemiology. I lived and worked in Egypt for five years, conducting research on gender and health, while serving as a Ford Foundation Program Officer for Child Survival and Reproductive Health for the Middle East. Since 1992, most of my work has been in the United States, with brief consultancies in the Middle East. I was part of a team that evaluated needle exchange programs for injection drug users in the United States and Canada, spent six years as a behavioral scientist in a county health department, and conducted research and designed programs to eliminate the gap in health and survival facing people of color in Syracuse, New York. I gradually realized that the differences in the causes of poor health between Egypt and Syracuseâbetween the so-called âdeveloping worldâ and the âdevelopedââare overrated. The real differences are between those whose lives matter and those whose sickness and death are nearly invisible.
For example, I wrote the following field notes in 2000, while working as a short-term consultant on maternal mortality reduction in Ministry of Health hospitals in Upper Egyptâthe poorest part of Egypt, which is actually in the southern part of the country, taking its name from the south to north flow of the Nile:
1:00 a.m.: I was walking through the hospitalâs empty reception-emergency area, and came upon a group of people all yelling at once, half dragging a pregnant woman and being led by the hospital gatekeeper through the darkened first floor of the hospital to the elevator. The elevator doors remained shut, however, despite numerous pressings of buttons, banging and yelling for attentionâthe elevator operator, peacefully napping in a hidden corner, couldnât hear their clamor. We climbed the two flights to the delivery area, pulling and pushing the laboring woman who paused with each pain, arriving breathless, all calling at once to the lone first-year obstetrical resident, who was meanwhile massaging the fundus of yet another just-delivered woman, in an effort to stanch her bleeding. The only other staff on dutyâtwo nurses, inexperienced and under age twenty, and an elderly cleaning womanâhelped the newly-arrived woman onto a delivery table, sternly admonishing her chaotic relatives to wa...